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three patients with EDS/HSD & comorbidities one with a Mighty Well backpack, one with a cane
Chronic IllnessTreatment and Care

EDS & Co: what you need to know

by Ariela Paulsen
written by Ariela Paulsen

Friends in the Fight pictured above: @zebratissues, @bendy.bookworm, @classifiedanomoly

If you’ve recently been diagnosed with Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD), odds are it was a long and challenging road to get there.  When I was diagnosed in 2017, patients with EDS/HSD struggled with symptoms for an average of 12 years before finding a diagnosis.  While physician education in recent years is rapidly bringing that number down, any time spent with mysterious symptoms is challenging, if not traumatic.  Gaslighting or misdiagnoses from doctors only increase this impact.  Once landing on a diagnosis of EDS/HSD, doctors may still not have the education or time needed to properly treat this complex condition.  Thanks to the patients who have reached out asking for more resources and support, we have decided to create a series of blogs this month with information on EDS/HSD and its comorbidities (commonly referred to as EDS & Co).  With these tools, we hope to empower other zebras to heal, advocate, and live a full life!

if you can’t connect the issues, think connective tissues

This phrase has become a rallying cry and helpful reminder for doctors learning to identify EDS/HSD in their patients.  Many of these patients spend a lifetime with a slow creep of mysterious symptoms.  Some may be small, like itchy eyes or joints that popped during puberty.  Because these issues do not seem at all related, it is difficult for providers to connect the dots.  Often, they are dismissed as hypochondriasis or anxiety.  This phrase offers an alternative – that perhaps the issues are multi-systemic because they originate from the glue holding all organs together. 

Your body has different types of tissues – muscle tissue, neural tissue, etc.  Connective tissues are the fibers that hold together all the other tissues.  It’s the glue in your body.  It needs to be stretchy enough that you can bend and stretch, but tight enough that you don’t become a floppy mess.  Connective tissue disorders can be caused by blips and mutations in the genes that encode collagen and other building blocks of connective tissue.  Think of it as the blueprints or the computer code getting altered, so that every building constructed by the blueprints, or every file created by the code, is flawed.  This could be a huge issue; if the blueprints of a building were altered so that the entire foundation was a mess, the building would not be functional.  More likely, though, it’s a small enough flaw that it went unnoticed for a long time.  But when trying to build an addition to the building, or when hit by a storm, suddenly that flaw becomes a problem. 

The same is true for connective tissue disorders.  You may have had it your entire life, but were able to work around it without quality of life being impacted too much.  But when you get a bad illness, have a trauma (physical or emotional), or have a hormonal change (puberty, pregnancy, etc), it can worsen until you have to face that something’s wrong.

The good news is that there are some interventions that can make a big difference, and there are many of us going through similar challenges, so there are plenty of opportunities for building community and crowd-sourcing for tips!

https://animals.sandiegozoo.org/animals/zebra

some labels to know

Hypermobility is the term used for joints that stretch too far.  It can also be called joint laxity or hyper-flexibility.  It is believed that 10-20% of the population is hypermobile, but many do not have any symptoms.  In fact, likely many professional dancers, yogis, etc, have hypermobility, but no health problems!  Confusingly, some hypermobile people are actually not flexible!  Our ligaments are too loose, so our muscles take over and tighten up, leading to stiff, inflexible joints.  Problematic alignment from loose ligaments can also cause arthritis, which makes joints even stiffer.  Many patients and doctors dismiss hypermobility as an option because when asked “are you flexible?” the patient laughs and says “no, I’m horribly inflexible!”

A common connective tissue disorder is hypermobility spectrum disorder (HSD).  To diagnose this, you simply need a qualifying Beighton Score and consistent symptoms.  If you don’t have a high Beighton score, consider your age/historical questions (e.g. if you are no longer able to touch your toes, but could until you were 20…), as well as any other examples of hypermobility, such as: 

  • Is your skin very soft or stretchy?  
  • Do your shoulders and hips pop out a lot?  
  • Does your spine get all wonky sometimes?  
  • Do your ankles overpronate?  
  • etc.

The (outdated) Brighton Criteria can help you think about other examples of hypermobility that may be missed by the Beighton score.  Most doctors right now are not well-versed in diagnosing HSD, so feel free to walk in with a Beighton and Brighton printout and any other research you’ve found helpful.  Ask them to look up the UpToDate article about Joint Hypermobility Syndrome (JHS), or just bring a copy of it into the room. 

HSD is a spectrum, and can look very different from person to person.  There are likely several different genes that could be causing it — we just haven’t identified them yet.  The Ehlers-Danlos Society is working hard to fix this though!  Part of the HSD spectrum is hypermobility-type Ehlers-Danlos Syndrome (hEDS).  Symptoms and treatment are basically the same as other patients with HSD, but the EDS society has separated this smaller group of people into their own category in their efforts to isolate the gene.

There are also other types of EDS, that you can find in this chart.  The important thing to know is that one type, vascular Ehlers-Danlos (vEDS) can be much more severe than the others, so if you have a family history of unexplained bleeding or vascular collapse, you should get tested for the vEDS gene, which has been identified.  Don’t freak out though — this type is very rare!  And if you had it, you would know already that something scary is in your family.

Other connective tissue disorders do exist, like Stickler syndrome, Osteogenesis Imperfecta, Marfan’s Syndrome, etc.  Ask your doctor if they think you should see a geneticist to rule these out.  If you have a history of heart problems and “marfanoid habitus” (the body type of Marfans, including exceptionally long limbs), you should check out Marfans.

DNA genetic illnesses EDS

a note on genetics

Most connective tissue disorders are genetic.  This means that likely someone else in your family has it to some degree.  As mentioned earlier, though, many people have mild symptoms and may not realize something’s wrong until an event causes it to worsen.  

There is also the possibility of spontaneous generation, meaning no one in your family has this genetic issue — you had a random mutation happen in your genes, that wasn’t passed down from either parent.  Your children, should you have any, would be likely to inherit it from you, however.

And finally, sometimes hypermobility issues can develop from other issues, like a prolonged illness or exposure to mold.  The theory here is that the inflammation in your body can damage the connective tissues in parts of your body.  In these cases, you may not have a faulty gene, but rather just tissue damage.  

symptoms complex multi-systemic chronic illness

symptoms

Because connective tissues are in virtually every part of your body, HSD/EDS can affect any organ system.  That being said, the most common issues are:

HSD/EDS is, for reasons that are not yet fully understood, associated with other conditions, or comorbidities.  There are also many well-explained complications that can arise from having flawed connective tissues.  If you have symptoms that are severe or aren’t easily explained, consider getting checked out for the following:

complications:

(it’s good to rule these out just in case, since they can get worse if not caught early!)

comorbidities:

**POTS and MCAS are especially common comorbidities of HSD/EDS. 

Check for POTS if you have headrushes, get short of breath or lightheaded, have trouble standing still without wiggling or getting dizzy, feel the need to sit/lay down a lot, experience fainting, vomiting, fatigue, or tachycardia (fast heart rate). **Doctors may not know how to test for POTS. Learn more here.

Consider MCAS if you have many (or weird) allergies, IBS, migraines, palpitations (heart pounding), fibromyalgia, asthma, hot flashes/chills/flushing, especially if any of these symptoms are triggered by foods, alcohol, temperature, smells, exercise, or emotions.  Testing for MCAS is very complicated.  Until researchers develop more accurate tests, many patients are given a “presumed diagnosis” of MCAS.  They can then try treatments to see if they offer any relief, for example taking Benadryl (**dye-free! Pink Benadryl may not help if your mast cells react to red dye) during a migraine or IBS event to see if it helps.  This may indicate that mast cells are at the root of the issue.  Consider tracking your foods and symptoms or asking your doctor to try a mast cell stabilizer to see if it helps.

physical therapy with EDS-aware PT

treatment

Improvement for HSD/EDS can mostly be found in careful exercise and listening to your body.  Strengthening your muscles will help tighten up your joints.  It is crucial to find a physical therapist who is well-versed in hypermobility, though – you can do further damage by trying to exercise without the awareness of what could make it worse.  The Muldowney physical therapists in RI are some of the best HSD/EDS specialists in the US.  If you are in the northeast, consider seeing them once and then buying the Muldowney protocol book to work on with a local PT.  The book has helpful info about what might be causing issues for you, and clear step-by-step exercises that you can easily do from home once you’ve gotten some basic guidance from a PT. There are also many braces, tapes, and other products that can help support each joint. You can ask a doctor or PT who is knowledgeable about hypermobility/chronic pain for suggestions, crowd-source ideas from HSD/EDS support groups, and do some trial-and-error on your own. For example, you may find that heating pads help one joint, while ice packs are helpful for another, and mint aromatherapy cream helps your headaches… it’s important to remember that not all hypermobile bodies are the same, so an individualized approach is best.

On that note, listening to your body is a crucial element of “treatment.”  If you need to sit in a weird position, do it.  If you feel the need to lie down, give yourself permission.  Find ways to slow down the pacing of your life (more on this in a post coming later!). Reduce stress wherever you can. Learn to tell what makes you worse, and avoid those activities.  Note: exercise may actually be a trigger!  This can happen with comorbidities like POTS and ME/CFS.  Talk to your doctor before resuming exercise, if this happens.  You may need to treat those conditions first, before continuing with exercise.

On the flip side, what makes you better?  I realized my hip stopped popping out for a week or so after a good hike, so now I’ve added that to my treatment toolbox!  If your joint is protesting, stop what you’re doing.  If your muscle feels tired and sore, that probably means you’re doing productive strengthening, but sharp pains or the feeling of pulling/stretching/straining your joints is not productive.  In general, avoid stretching altogether.  It feels really good for stiff, sore muscles to stretch them out, but in hypermobile people, this can actually stretch the ligaments as well, which are not like muscles — once they stretch out, they can’t tighten up again. 

On that note, pay attention to different types of pain!  You may be able to reduce pain by figuring out what kind of pain it is, and tracking what helps.  

Check out an example of pain mapping here.

moving forward with a diagnosis

next steps

That was a LOT of info.  Here’s where to start:

  • Talk to your doctor about all of this.  See what they think.  Feel free to bring research in with you, since they may not actually know about this stuff.
  • Find a hypermobility-aware physical therapist and start moving!  Even if all you can manage is a slow walk or some reclined PT exercises – motion is lotion to hypermobile bodies.
  • Pay attention to what you eat.  Try to cut down on highly processed foods, and notice what makes you feel better/worse.
  • Prioritize your life — it’s going to take work to let your body heal!  Are there any people/activities/stressors in your life that aren’t helpful right now?  Consider weeding down to things that will make you feel comfortable and happy.  And don’t forget to set aside self-care time, just for you, and rest! 

Community support can also be a gamechanger, whether for emotional support or crowd-sourcing HSD/EDS life hacks!  There are plenty of EDS, POTS, and MCAS support groups online and some in person.  You can also check out our Friends in the Fight Facebook group – although we are open to those whose life is affected by any illness, many of our members have EDS & Co and are eager to provide support and community!

Good luck on your journey! We are Mightier Together 🦓♡

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I don't have an eating disorder | feeding tube
Chronic IllnessFriends in the FightTreatment and Care

When Doctors Assume You Have an Eating Disorder

by Ariela Paulsen
written by Ariela Paulsen

Any society, or really any group of people, will carry biases.  We are taught – subconsciously much of the time – to make assumptions about people based on qualities like race, gender, age, etc. This does not make us bad people, but it is important for each of us to examine the implicit biases we carry and work to catch ourselves before we say something hurtful or discriminate against others.  

One common bias in America is weight.  We ascribe moral value to people’s eating habits.  We assume one person is healthier than another solely based on what they look like.  We often comment on one another’s weight fluctuations without thinking about the context of the change or how our comments might impact anxiety, self-image, or even unhealthy eating patterns and eating disorders.   

With chronic illnesses, this can get extra tricky.  Someone may have lost weight because their illness is flaring.  Telling this person “wow, you look so good!” sends a confusing (and potentially dangerous) message.  

This person thinks I look better, healthier even, when my body is not absorbing enough nutrients.  

Someone who has gained weight due to starting a treatment that has helped them to feel better may get comments from people who assume the increase in weight is due to unhealthy eating or lifestyle changes.  It invalidates this person’s journey to hear that people judge them for “letting themselves go” when all they’re trying to do is feel ok.  

People seem to think I am healthier when I feel terrible.  I guess how I look is more important to them than how I feel.

More on body image and illness here.

Because doctors and other providers are humans within our society, they also carry these biases.  More than this, doctors may have been specifically trained to view BMI as an indicator of overall health.  They may suggest weight loss as a treatment before pursuing other possible causes for symptoms, or assume a patient is feeling better simply because they have lost weight.  Unfortunately, these beliefs and suggestions can have a negative impact on patients’ health and overall wellbeing.

More about bias in medicine here.

We recently heard from our Friends in the Fight about another unhelpful assumption – that a patient losing weight has an eating disorder.  Eating disorders are a legitimate concern (and are increasing due to stress and food insecurity during Covid) that should be ruled out when patients experience weight changes, but they are not the only answer.  Believing patients when they are concerned that something else might be wrong is crucial.

We reached out to three of our Friends to hear their stories:

Claire Lapat

@chronicpains.chronicgains

I had some serious nutritional deficiencies and broke my hip my sophomore year of high school, which never healed right due to my nutrition deficiencies which were always just brushed off as an eating disorder because I was young, thin, and female (and a distance runner) so I fit the bill. I went to a different orthopedist my senior year of high school and he saw inflammation in the visualized colon on my pelvis MRI. He referred me to a GI who just shoved a popsicle stick up into my rectum and told me I was too young for a colonoscopy and to take some Colace. It took about 8 years to get a Crohn’s diagnosis and now it’s so hard to treat due to the severity of it.

What feelings did this bring up for you?  Do you feel it affected your ability to get the right care?

When it first came up and was seriously talked about I was 16.  I didn’t think much of it and never met with the eating disorder clinic people my doctor referred me to. I just attributed the deficiencies to running and soccer and the fact I was burning so many calories every day. Once I got sicker and I was more malnourished, I got frustrated because I felt so awful and knew I didn’t have an ED.  It was so frustrating each time I was brushed aside as another young woman trying to avoid gaining weight in college. I’d refuse to see any doctor again who brushed me off as having an ED.  Too many times it was emergency room doctors who took the easy way out – diagnosed me with an ED and told me to follow up with a psychologist. This is definitely one of the main reasons why it took me over a decade to be diagnosed with Crohn’s disease and why my disease is currently not responding to treatments.

What do you wish others knew about this assumption?

I’d want them to know that it’s not sexist to consider an eating disorder as a possibility as EDs are very serious and are the most deadly mental health condition, but they’re not always the answer and all possibilities must be explored. As a physician, it’s their job to think critically and only considering an eating disorder is lazy.

Alex DePaulis

I had a doctor flat-out tell me my allergies were probably fake, and moments later ask me if I’d ever had an eating disorder. I went for help BECAUSE I was unintentionally losing so much weight at an alarming rate. I was so scared I was dying. And he made me never want to get help.

What feelings did this bring up for you?

I was incredibly insulted. That doctor was an emergency room doctor that ignored me when I said I was in the process of being diagnosed for an autoimmune disease (Diffuse Systemic Scleroderma). I originally went there for breathing problems as instructed by my primary. He immediately dismissed everything I said. I let him know I was ANA positive. I had ulcers on my fingers from Raynauds (which were covered by bandaids and not something I addressed). He made me take off my bandaids and imitate the act of putting my fingers in my mouth to see if they would match to bulimia as he said that ulcers appear on fingers sometimes due to acid from stomach contents. I felt dismissed, hurt, and angry. He ignored the fact that I was currently undergoing a diagnosis and treating the issue I came in for originally and went right to dismissing everything I worked hard and built up to treat. I was alone and felt like advocating for myself was useless. It made me want to give in to my depression

You mentioned that this experience made you never want to get help again — how were you able to build yourself back up and seek the right care after this?

I leaned on my friends and family for support. They knew how bad I was hurting physically and mentally. They knew the real me and helped me get the help I needed. I moved back to Massachusetts and the doctors there listened to everything I had to say and some. I was diagnosed almost immediately and have been in treatment ever since!

What do you wish others knew about this assumption?

Illnesses are not always easily identifiable. It’s significantly easier to be empathetic and listen rather than to assume and judge. Doctors, especially when first meeting someone, should always be held to that standard as well.

The scariest feeling in the world was feeling like doctors were looking at me like I was lying. They stereotyped me based on my age, weight and hair color and put me in a box I never belonged in. They even ignored the symptoms I tried to tell them about for 2+ months which caused further damage to my small intestine and resulted in emergency surgery. Gaslighting is such a real occurrence in the medical world, especially with young girls, and can be SO dangerous. And it messes with your head.

Jaime

@relentlesslysassy

Relentlesslysassy.com

I have intestinal failure, gastroparesis, and severe redundant colon. I got sick at 17 (end of 11th grade) and over the next 6 months stopped tolerating any food orally at all. I was put on a GJ tube for about 3 years, and then my GJ started flipping. Now I have a G and J tube. 

I was being seen by a full diagnostic research team in Baltimore. I knew these doctors, they felt like family, and I trusted them. They told me I wasn’t approved to move away to college because I was unstable. They told me I had to be admitted for medication trials. They put me on a pain management unit. It was actually half pain management and half geriatric psych. It made sense though because I have chronic pain. Once I was admitted they started manipulating my parents. They told them to stop visiting me, and then the doctors started treating me strangely. Before I knew it they had me in an office with my parents on speaker telling my mom I have an eating disorder. I remember my jaw literally dropping. I couldn’t believe this was actually happening. It got worse and worse, and my parents didn’t believe me, and I was so scared that no one would ever believe me ever again. They started bolusing my feeds to increase my intake, but I had a J tube so the bolus feeds were too much and I was always vomiting. Then they said I was bulimic. It went on for months. Eventually my jejunum ruptured from the bolus feeds and I had to have surgery to repair it. It took about 6 months for my family to process all the manipulation that had just happened and to realize what had happened.

What feelings did this bring up for you?  Did it affect your ability to get the care you needed?

I ended up having to leave the team that felt like family because although they weren’t the doctors on that unit, I can’t shake the thought that they all knew what was happening to me on that psych floor and were going along with it. It definitely affected my ability to get good care at my home hospital. Plus, it was on my record for a while and I was always explaining that I never, ever had an eating disorder. I still have to defend it.

What do you wish others knew about this assumption?

The second someone has a diagnosis, there should never be a mention of eating disorders. I know that may not be the best answer because there are a lot of girls who don’t have a diagnosis yet and they certainly don’t deserve to be under investigation for an ED either. BUT, one of the most frustrating aspects of my experience was that they were somehow ignoring my factual diagnosis to make their own and prove a point. It was so frustrating.

Have you struggled with assumptions and bias in medicine? Learn how to self-advocate here, or join the conversation in our Friends in the Fight facebook group!

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Side-by-side photos of a bespectacled woman smiling, with naso-jejunal and gastro-jejunal feeding tubes.
Chronic IllnessMedical DevicesTreatment and Care

Confused About Feeding Tubes? Breaking Down the Types

by Ariela Paulsen
written by Ariela Paulsen

If you’ve recently been told that you need a feeding tube, you likely have many emotions and questions.  Know that you are not alone and, while this new chapter may feel scary, feeding tubes can be incredible tools for getting your body the nutrients it needs to heal!

There are many reasons why someone would need alternative nutrition, and so there are many types of feeding tubes to meet different needs.  Learning a bit about each type can help you go into your next appointment feeling prepared.

For other questions, support, and gear, check out First Feeding Tube: What to Expect, our Feeding Tube Resource Guide, and the best backpack for tube-fed patients.

what do the different names / acronyms mean?

Here’s a little dictionary to get you started:

To describe how the tube is inserted –

  • naso – inserted through the nostril
  • oro – inserted through the mouth
  • percutaneous – inserted through the skin (on the abdomen)
  • endoscopic – placed using an endoscope (camera inserted in the esophagus) 
  • stoma – hole in the abdomen created to insert feeding tubes

Naso/oro tubes do not require surgery but can cause tissue breakdown if left in longer than 4-6 weeks.  They are therefore often used for shorter-term needs.  Percutaneous tubes require surgery for placement but can stay in long term.

To describe where the tube empties into –

  • gastric – into the stomach
  • enteric – into the intestines
  • duodenal – into the first part of the small intestine
  • jejunal – into the second, larger part of the small intestine

Different types of tubes are described by matching up these terms to show how they are inserted and where they empty.  For example, a nasogastric (NG) tube would enter through the nose and empty into the stomach.  A percutaneous endoscopic jejunal (PEJ) tube would enter through a stoma in the abdomen and empty into the small intestine.  This process would be guided by an endoscopy camera.

what do these different tubes look like?

Images and descriptions below thanks to Emily, Mighty Well Ambassador and disability advocate! Learn more about feeding tubes @zebratissues  

A bespectacled woman with a naso jejunal feeding tube smiles

Nasojejunal (NJ) tubes, are soft and flexible tubes inserted through the patient’s nostril. The tube ends in the jejunum, part of the small intestines.

These tubes are commonly prescribed for short-term use and treatment of malnutrition. However, many patients will undergo a trial period of tube feeding with a nasal tube to see if their body tolerates enteral feeding before undergoing a surgical feeding tube placement procedure.

Both medications and formula can be administered through the feeding tube to make sure patients receive optimal nutrition and medication absorption.

A woman’s torso, showing a gastro-jejunal tube inserted in her abdomen.

Gastro-jejunal tubes (also called percutaneous endoscopic gastro-jejunal, or PEG-J) are a surgically-placed feeding tube that enters the stomach through the abdominal wall and reached down to the jejunum for enteral feeding and medication administration.

These tubes access both the stomach and the jejunum. This allows the patients to vent or drain their stomach when nauseated, release built-up air from swallowing, etc.

There are two types of GJ tubes. There are danglers, where the tubing comes out of the abdomen with a y-shaped port for access. These tubes are used for initial placement but are also more readily covered by insurance.

Low-profile or button tubes, such as the Mic-Key GJ tube pictured above, are placed after the initial healing process. These low-profile tubes allow the patient more freedom and only have the tubing attached when feeding/venting/draining.

For more on different types of tubes, check out the Oley Foundation’s guide to Choosing the Right Tube!

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Justin Bieber: Ramsay Hunt Syndrome
Chronic IllnessFeaturedLyme Disease

Justin Bieber: Ramsay Hunt Syndrome

by Ariela Paulsen
written by Ariela Paulsen

Just a couple of years ago, Justin Bieber shared that he was battling Lyme disease.  It was rough, but he was able to take the time and treatments needed to heal.  He used his platform to advocate about Lyme, even making a documentary about his experience battling mental illness, Epstein Barr, and chronic Lyme.  Justin talks about how hard it is to just get out of bed in the morning.  He shows the brutal fatigue and opens up about the struggles, even showing his treatments and doctor visits.

After making a remarkable comeback, Justin is taking a break once again to heal, this time from a condition called Ramsay Hunt Syndrome.  This neurological condition is when the virus responsible for chickenpox and shingles (VZV) attacks the nerves in your face.  VZV can linger dormant for years after the initial infection, reactivating decades later to cause Ramsay Hunt Syndrome.  It is estimated to affect 5/100,000 people in the US (mostly adults over 60), but researchers have noted that it may be too underdiagnosed to have an accurate statistic.  

The symptoms can include (but are not limited to): 

  • painful, blistering rashes
  • ear and facial pain
  • vertigo
  • face paralysis (which can cause slurring and dry eye)
  • changes in hearing such as deafness or tinnitus 

Diagnosis of Ramsay Hunt Syndrome can be tricky, as not all patients will experience all of the symptoms, and they may not occur simultaneously.  For example, first the patient might develop tinnitus, then sometime later a rash, followed by paralysis once the rash has cleared up… Doctors may see each symptom as a separate issue without connecting the dots.  If a doctor suspects Ramsay Hunt Syndrome, VZV can be identified in tears, saliva, or blood, but tests are not necessary for diagnosis.

Treatment – antivirals and steroids – is much more effective early on so a quick diagnosis is important.  Symptoms typically clear up, but paralysis and hearing changes can become permanent in some cases.  

Justin has been open about this new chapter in his healing journey, posting images and video of his face paralysis.  He is confident in his recovery, but will be taking it easy until his body has healed.  

@justinbieber on instagram

Justin, thank you for your open honesty, using your voice to shed a light on the chronic illness world, and for reminding us that it’s ok to slow down.  We wish you the best in your healing process ♡

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Disability and (in)visibility: 4 things to keep in mind
Chronic IllnessFriends in the FightThe Undefeated

Disability and (in)visibility: 4 things to keep in mind

by Ariela Paulsen
written by Ariela Paulsen

@zebratissues, @mxdevin, @thediabetesdiva

This week was the start of Disability Pride Month.  We’ve loved seeing posts from our Friends in the Fight sharing their own stories of disability, both the challenges and the pride!  One theme that comes up a lot in lived experiences of disability is the nuances of visibility.  What makes some disabilities visible? Whether from physical markers, mobility aids, or other medical devices, how does visibility change the way individuals and systems in our society recognize disabilities as “valid”?  How does it affect our ability to get accommodations and quality health care?  

Here are a few things to keep in mind about disability visibility:

1. mobility aids and other devices are not shameful

Having a disability can be challenging.  Some disabilities, however, don’t need to hamper quality of life with the right accommodations and tools!  Devices like wheelchairs, canes, walkers, hearing aids, feeding tubes, vascular access catheters, and so many more, are incredible innovations that can drastically improve life with disabilities.  They should be viewed as beautiful, life-giving tools. Unfortunately, abled people – and representation in the media – often view these tools as negatives.  They are visual reminders that someone faces challenges, which bring up uncomfortable emotions.  It’s often those closest to us who have the most trouble with these visual reminders because they feel more deeply the grief involved in watching someone you love struggle.  Mobility aids and medical devices are also markers of difference, something our society hasn’t always taught us to embrace.  Whatever the reason, disability communities are working hard to remove the stigma around devices.  There is nothing shameful about using the tools and technologies available to enhance your life!  We all do this – we use phone reminders to help remember things. We use cars and bikes to make travel easier.  We use subtitles in situations when we can’t understand something being said. So why would there be anything shameful about using a wheelchair to get around?  Or a cane for balance?  Or hearing aids? Or a tube to get the nutrition or medication that helps us stay strong? 

@chronically.evie

2. not all disabilities are “visible”

Many disabilities are visible.  Our society has taught us to look for wheelchairs, white canes, or scars as proof of disability.  But this is a wildly incomplete picture!  People may have disabilities related to hearing, vision, memory, comprehension, communication, pain, energy, fainting, balance…  You likely know someone who struggles with one of these issues, possibly without your knowledge!  They may qualify for accommodations in school, at work, when traveling, or in receiving income.  These barriers can be just as disabling as the disabilities we are taught to look for. 

Invisible disabilities come with their own benefits and challenges.  When no one can tell you are disabled, you don’t have to ward off as much stigma.  You can “pass” as abled when wanted.  You can choose who is worth telling and who is not.  You can present any of your identities when meeting someone new, without “disabled” being the identity they first notice.  Invisibility is not always a benefit, however.  It often requires more communication.  When seeking accommodations such as different lighting or a space reserved for people with disabilities, we are often asked for justification.  “You don’t look disabled” can be used as a challenge, requiring further advocacy.  This invalidation of our needs can feel emotionally draining, even triggering.  It may be more difficult to receive the disability payments, health care, or accommodations we truly need.  We also may be more likely to push through dangerous situations rather than seeking support because we are used to trying to pass abled, or because we are too exhausted to deal with the pushback.

the gray area

And then there are the disabilities that exist in the gray area between visible and invisible.  We may have physical markers that are sometimes hidden, or devices that we don’t need all the time.  In this gray area, we experience the benefits and challenges of both visibility and invisibility.  It is ok to go back and forth in whether or not your disabilities are seen!  It is ok to use these times of visibility to find supports and community, or to just show pride in your disability!  We use this flexibility in our other identities – wearing a religious symbol in some situations, but not in others.  Sharing our sexual orientation with some but not disclosing with others.  It is normal, and does not mean you are faking.

Mighty Well products were created out of this gray area.  Our PICCPerfectⓇ PICC Line Covers are made to keep medical devices discreet in those moments when you’d rather not have your health be at the forefront of people’s minds.  But with bolder colors and patterns they can also be a fantastic conversation starter when you’re feeling proud and wanting to be visible!  Our medical backpack is made to look like a regular designer backpack, so that you can infuse, tube feed, or just carry all of your medical gear on the go, without anyone having to know.  But it can also be a way to proudly bring that part of your life out of your private spaces, to bring others into what your life is really like.  And for those times when you want the world to know that you need them to mask up or give you space, but don’t want to have to justify or advocate, you can let our immunocompromised gear do the talking.

Click here to see more of our products designed by patients with disabilities!

3. disabilities can wax and wane

Not only is it ok to let your visibility be fluid, but sometimes disabilities themselves can come and go. Someone with disabling headaches may be out and about one day and unable to move the next.  Cognitive impairment can fluctuate.  Pain flares and joint dysfunction are not always steady.  Even disabilities involving vision or wheelchairs can go up and down over time.  This can pose a challenge since we tend to view people as either abled or disabled.  But someone who lives with disability can also have times when they don’t experience these challenges and don’t need accommodations.  This does not mean that it is made up or that they don’t genuinely need these supports at other times.  It also doesn’t change their identity – people may identify as disabled even if their disability hasn’t flared in years.  Our experiences with disability can be formative in the development of our personality, how we live every day, and in the communities we are part of.

Many folks with disabilities are accused of “faking” when in these times of health and strength – and the internet has only heightened this.  These periods should be a time to live life to the fullest, without worrying about this perception.  It is important to be a source of support for people no matter how abled they seem, instead of assuming that they aren’t disabled anymore or minimizing the challenges they faced previously.  Remember also that you might not know what work is happening behind the scenes.  Perhaps this period of ability is only made possible by significant effort, medications, therapies, or lifestyle changes.  The time, energy, and money spent on this work also impact this person’s life, and to minimize that by just assuming they no longer face challenges doesn’t do justice to everything they are going through.  If they run out of funds or energy to keep up this hard work, and thus slip back into a period of worsening disability, it is not their “fault” for letting it happen.

@zebratissues, @chronicpains.chronicgains

4. ableism can also wear many faces

Some disabilities come with grief, discomfort, and limitation.  For others, the disability itself is not so bad!  In fact, living with disabilities can bring us wonderful communities, increased empathy and critical thinking, resilience, and a deep understanding of our own bodies and minds.  We can thrive, without feeling held back, in environments that are accessible.  When our needs are met and we aren’t confronted with stigma, we can reach our full potential.  In many cases, it’s not disability but rather ableism that makes life difficult.  

Just as disabilities can come in many forms, so does the ableism we face.  It can be systemic, such as fighting through red tape to get the rights and benefits you qualify for under the Americans with Disabilities Act (ADA).  It can be fighting to make your disabilities recognized as valid to friends, coworkers, and even doctors who may have been taught to assume that it is all in your head.  It may be in small moments when you make an assumption about someone based on their disability, or shy away from someone because their difference makes you uncomfortable.

Like any form of implicit bias, we all – including disabled folks – carry these problematic assumptions.  There is no need to feel ashamed of this, as shame is rarely a productive emotion.  It is important, however, that we watch for our own ableism and work to unlearn these beliefs and reactions. Happy Disability Pride month to all, regardless of (in)visibility!  Share your disability story with us in our Friends in the Fight facebook group, or tag us on Instagram, Facebook, or Twitter.

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Disability Pride Month
Chronic IllnessMightier TogetherThe Undefeated

Disability Pride Month

by Ariela Paulsen
written by Ariela Paulsen

Featured above: Friends in the Fight celebrating Disability Pride — @survival_of_the_sickest, @maddiexgordon, @taylorthetransgineer, @kristendoornbos, @thedisabledhippie

As June winds down, I often feel a twinge of sadness knowing that Pride Month will end.  I don’t care much that the silly rainbow-themed products in big box stores will be moving to the clearance section.  It’s the coming together of community that brings me so much joy in June.  My queer and trans friends shower a little extra love on one another.  We show up together at parades and brunches and wear our identities a bit louder.  While I know that my city hanging flags doesn’t bring systemic change, it does make my heart a bit fuller, my step lighter.  I feel seen, loved, and part of something bigger than myself.

I take some time, each June, to think about the work that is still to come and how I can help to move the needle forward.  I learn about the incredible trans and queer activists who brought us Pride and the many societal improvements that LGBTQ+ folks have today.  It is remarkable just how many of these activists are BIPOC and/or disabled.  Some have had to fight for equality on several fronts – race, gender, sexual orientation, religion, disability… This intersectionality is at the core of the queer and trans rights movements.  It also plays out in how we celebrate pride (see me pictured below with my friend at Pride, celebrating the importance of staying hydrated for our POTS diagnoses – him in a wheelchair and me in rainbow compression socks).  It is evident in the demographics of our support communities.  It is also part of the history of Disability Pride Month.  

Disability Pride Day was first held in Boston in July 1990, following the passing of the Americans with Disabilities Act (ADA) on July 26, 1990.  This celebration included the first Disability Pride Parade, which was organized by Diana Viets, a disability rights activist, and Catherine Odette, a queer activist and creator of the Dykes, Disability, & Stuff newsletter. Disability Pride Parades have been held in over a dozen cities around the US since the first parade in Chicago in 2004, and in July of 2015, former NYC mayor Bill De Blasio declared July “Disability Pride Month” ahead of New York’s first large-scale Disability Pride Parade.  

Ironically, this movement has gained visibility since the start of the pandemic.  As celebrations turned virtual, disabled communities around the world realized that these online venues are more accessible for many participants.  Visibility campaigns included those who may not have been able to march, but could post on social media each day of July about what disability means to them.  Our friends and family – not to mention the larger audiences of reposted content – could witness the nuances of what disability can look like.  They could get involved and learn without having to physically show up.

More on how the pandemic has affected accessibility here.

At this moment, when many disabled folks feel isolated in a society resuming “normal” life, Disability Pride Month is a way to connect and be seen.  Let’s share our stories.  Share the pride (because, yes, we are proud to be disabled!) as well as the bad days.  Let’s post pictures of what disability can look like so that our diverse community is not reduced to an icon on a blue sign.  And let’s learn!  Read, watch, and listen to others’ experiences.  Use your platforms to repost and elevate the stories being shared.  If nothing else, let’s spend this July spreading love, empathy, and pride in our many intersecting identities.

Happy Pride and Disability Pride to all of you, my dear Friends in the Fight ♡

www.thehiddenco.com

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Myasthenia Gravis Awareness Month
Chronic IllnessFriends in the Fight

Myasthenia Gravis Awareness Month

by Ariela Paulsen
written by Ariela Paulsen

June is Myasthenia Gravis Awareness Month.  If you have never heard of MG, you are not alone!  We reached out to Friend in the Fight Katie McCurdy to shed some light on this autoimmune condition that affects tens of thousands of Americans.

Katie McCurdy is an autoimmune patient, designer, and founder of Pictal Health, a company helping patients tell their health stories visually. Learn more at katiemccurdy.com and pictalhealth.com.

diagnosis 

When I was 13, I was sitting at dinner with my family and my mom said, “why are you laughing like that?” I ran to look in the mirror and was met with a strange, snarling expression instead of my usual laughing face. 

The symptoms came on that quickly. Perhaps it wasn’t overnight, but it was very fast. Sudden facial weakness meant I was having trouble smiling and playing the clarinet, and my arms tired while washing or brushing my hair. My eyes felt droopy and I had double vision while looking to the right. I felt fatigued all the time.

I was incredibly lucky that my pediatrician immediately suspected Myasthenia Gravis, a neuromuscular autoimmune that causes weakness. She referred me to a local neurologist who confirmed the diagnosis within weeks of my first symptoms. 

symptoms 

Myasthenic weakness is caused by a breakdown in the nerve synapse. But what that weakness looks like can be different from person to person; they call MG the ‘snowflake’ disease because it affects everyone differently. 

There are common sub-conditions: Ocular MG, which affects just the eyes and causes double vision and eye drooping, and Generalized MG which causes more widespread weakness. Many people with generalized MG have weakness in their limbs that makes it difficult to stand, walk, and lift their arms above their head. As someone’s symptoms worsen during a flare, they may have trouble talking, chewing, swallowing, and even breathing – this is called a myasthenia crisis and can potentially be deadly. 

I am lucky that my symptoms have not affected my limbs too much, and I have also never had a breathing crisis. But my facial weakness – the inability to smile or make normal facial expressions – affected me mentally and emotionally for 25 years. I would avoid talking to people in public if I wasn’t having a strong face day. I would worry that my smile/snarl would come across as sarcastic or just plain weird. 

diagnostic delays

Many people face years of symptoms before finally getting their diagnosis (the average time to get an autoimmune diagnosis is about 4.5 years). I am grateful my path was so short and efficient. 

I have personally known people who have been through horrible, demoralizing diagnostic journeys on their way to an MG diagnosis. A family friend, a man in his 70s, went through multiple eye surgeries that attempted to ‘fix’ his newly droopy eye; but since the eye was drooping due to MG muscle weakness, these surgeries were ineffective and frankly totally inappropriate – his ophthalmologist should have known that MG could be the cause of a droopy eye. 

Another friend has faced extreme medical gaslighting because she is one of the 10% of MG patients who do not have detectable biomarkers that could lead straight to a diagnosis – and she happens to have a mental health history. She has been told over and over that her symptoms are in her head, as she struggled to walk, stand, hold her head up, chew, swallow, and even breathe – classic and dangerous symptoms of runaway MG. 

treatments

Fortunately, there are a few different treatments for MG patients. I’m not an expert in all of them, but I’ve taken a medication called Mestinon for 30 years; I’ve also taken the corticosteroid Prednisone for 25 years. (My doctors are not happy about this, as Prednisone leads to osteoporosis and other side effects, but my body has become dependent on it so I continue to take a low dose daily.) Prednisone is one of many immunosuppressants, drugs that reduce the immune system’s activity and therefore reduce autoimmune symptoms. I take another immunosuppressant called Cellcept, which was originally used in organ transplant patients. 

Even with these three drugs, my symptoms were still noticeable and interfered with my daily life. Finally, in 2017 I started IVIG – IV Immunoglobulin infusions. Within a few days, my MG symptoms were simply gone. I had a strong smile for the first time in 25 years. My voice strength came back, and my eyes felt more ‘open.’ I felt more alert. I could fully participate in yoga classes, and my arms and legs quickly became stronger. Now I get home infusions (administered by my awesome home infusion nurse Amy) two days per month, for five hours each day. 

Finding a treatment that works has been life-changing. I’ve had more strength and energy at work, and finally don’t have to worry my voice will give out when I’m giving presentations. My inner extrovert has finally been released: I am happy to stop and talk to any friend or acquaintance at any time! 

So life is drastically improved for me (though I still deal with rolling symptoms from my other autoimmune condition, Sjogren’s Syndrome, and allergic symptoms resulting from Mast Cell Activation Syndrome.) 

IVIG has worked for me, but it doesn’t help everyone. Many people continue to try different treatments without fully resolving their symptoms. Right now, there are some new MG drugs being released – I feel hopeful that patients like me will have lots of options and that more folks will find something that works for them. 

community 

I haven’t really been an active part of any MG communities. Since I got MG when I was 13, and the condition mostly affects older people, it was hard for me to identify with others at the MG support groups I attended. I did travel to Miami one year to attend the Myasthenia Gravis Foundation of America’s annual conference, and I met lots of other young people there; the experience was really important to me and helped underscore just how different each person’s symptoms are. 

tips for other MG patients

Find a doctor who listens and who understands MG. My neurologist, Michael Hehir at the University of Vermont Medical Center, always makes time to answer my questions and is up-to-date on best practices and treatment options for MG. It’s a huge relief to know I have a doctor I can count on. 

My first neurologist gave me a tip that I’ve used many times: If you’re having double vision due to MG, wear an eyepatch or put a piece of scotch tape over one lens of a pair of glasses. This effectively limits your vision to one eye and makes it easier to get through your day.

Watch out for magnesium. This supplement can be helpful for many, but it can also flare MG symptoms. I’ve re-learned this recently.

Stress and lack of sleep are big symptom triggers for me, and I suspect they are for others. Stress management is one of the best things we can do for ourselves. 

It’s worth playing with dietary changes to see if this helps your symptoms. I have found that my autoimmune symptoms calm down when I avoid foods that have dairy and gluten. But each person’s food triggers are different.

And of course, be kind to yourself and meet yourself where you are! With autoimmune conditions, we don’t know what each day will bring. 

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Body Image and Mental Health in the Time of Covid
General Wellness

Body Image and Mental Health in the Time of Covid

by Ariela Paulsen
written by Ariela Paulsen

Each year around June, I notice a smidge of angst rising in a small corner of my mind.  The lingering chill of winter in New England is finally fading and, while I am here for it, the rising temperatures come with some baggage.  Heat is my #1 trigger for symptoms, both from POTS and MCAS.  The best way for me to manage those symptoms is to strip away layers of clothing, ideally spending the hottest days in the water.  And yet…

Chronic illness can come with some body image complications.  For starters, the dissonance of having a body that routinely doesn’t work “right” can impact our psyche.  Then come the years of weight fluctuations, scarring, and other visible reminders of the lack of control we have over our bodies and our illness.  Worst, perhaps, are the comments we receive about these physical changes.  Being sick and malnourished can result in compliments and the medication or feeding tubes that make us healthier often result in concerns over our weight gain.  The very devices that help us with mobility or access to care become reminders to those around us that we are sick or disabled, something that they may not have thought about before these wonderful tools made it visible.  While we may grow to see these changes as positive, even lifesaving, messaging from others can again confuse our brains into feeling shame or embarrassment about how they look.

We have explored these ideas before, of body positivity, representation of sick and disabled bodies, and respecting your body’s needs and differences.  But now, thanks to the pandemic (as always), we have new wrinkles to address.

Covid’s impact on routine

The last two years have thrown a wrench in every aspect of life.  We may have experienced different waves of change, like the initial lockdown in which we didn’t worry about routines, assuming this was all “temporary.”  Then, when it seemed more long-term, many used the quieter quarantine lifestyle to implement previously challenging changes.  Online exercise classes became easier to access and closed restaurants meant exploring new cooking adventures from home.  As things dragged on and began opening up, routines continued to shift.  This impact has looked different for each of us, but studies have shown some overall trends: 

If your body has changed in appearance over the last two years, give it some love!  Know that you are not alone, that your body is coping with changes in routine and stress levels, and that this is normal and natural.  Working to re-establish healthy routines can be wonderful for self care, but it’s helpful to be mindful of the goals we set because they help us feel healthier and happier, versus the goals we make because of body shaming.  If working towards a healthier future, don’t forget to also love your body as it is today ♡

mental health in general 

The state of mental health during the pandemic, especially in our youth, is a frequent headline these days. As days spent in the classroom or office became days spent in front of a computer screen, accessing social support became more difficult.  To compensate, many turned to social media, and consumed more media than ever before.  Anyone with existing challenges in their home environment had to spend more time in those conditions, with less access to supportive programs and care.  The general stress of living through a pandemic – not to mention the social and political unrest during that time – impacted conditions like anxiety, depression, and eating disorders.  

Eating disorders, in particular, have seen an increase in a wide range of triggers.  People experiencing anxiety and depression are more likely to develop an eating disorder, and the pandemic’s general uncertainty as well as the loneliness of quarantine complicated recovery. Early medical intervention can help prevent eating disorders from worsening, and the pandemic’s shift to Telehealth disrupted this care.  Social media messages, especially for teen girls, can tip the scales towards an eating disorder.  The changes to eating or exercise routines and weight fluctuations mentioned above may also have played a role.

While eating disorders and other mental illnesses are not always associated with body image, if this is coming up for you this time of year know that, again, you are far from alone in this challenge!  It is ok to seek help – you can talk to your doctor, find a therapist, and turn to friends and family for support.  

**Tip: having trouble finding a mental health provider who takes your insurance and isn’t full right now?  Try searching PsychologyToday.com – filter for providers who take your insurance, and then display results in reverse alphabetical order.  Most providers in the first half of the alphabet are full right now, but you may find more luck just by starting from the other end!

food insecurity

Perhaps a surprising factor in body changes and eating disorders has been food insecurity.  Anyone whose paycheck or cost of living was affected by the pandemic may feel some stress around buying food.  Healthier foods tend to be more expensive and delivery services for folks afraid of in-person shopping charge additional fees.  Supply chain issues have also caused random shortages of types of foods, such as chicken and milk.  Those with dietary restrictions or a history of food insecurity are particularly at risk, but many Americans have reported feeling stress over access to food in the last couple of years.  This stress around food has contributed to overall anxiety and eating disorders – both binging and restricting.  Feelings of guilt around food, even for financial reasons, can impact body image as well.

Thankfully, food access seems to be improving as the country opens up, although financial stress continues for some families.  Resources like WIC, local food pantries, and community gardening efforts to plant an extra row can help bring healthier food to your table.

Whatever this season brings up for you, we hope you will be kind to yourself and your body!  

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Accessing Medical Supplies
Chronic IllnessFriends in the FightMedical DevicesTreatment and Care

Accessing Medical Supplies

by Ariela Paulsen
written by Ariela Paulsen

Mighty Well was created when Emily Levy, our co-founder, was instructed to cover her new PICC line with a cut sock. She set out to find a better option and – when that failed – created the PICCPerfectⓇ PICC line cover!  This has been our mission from day one: to create the products we wish we’d had so that future patients can have the style, safety, and confidence they deserve.

And we are not alone – adaptive wear and medical product innovations have risen to fill the needs of patients who have come out of the woodwork to break down the stigma and barriers that kept our experiences in the shadows for so long!  There are so many products out there now that can make life with chronic illness smoother.   Many of them are even covered by health insurance.  But getting these products can come with red tape and barriers galore.  Now with Covid’s disruptions to supply chains and longer wait times for providers, these products have become even harder to obtain.

I recently experienced this when my thumb began subluxing.  I have Ehlers-Danlos Syndrome, so unstable joints are just a fact of life; but when my thumb was out of place, I couldn’t even lift a small book or plate of food.  My physical therapist, who specializes in EDS, prescribed me a special thumb splint.  I tried hers on and it was a miracle!  My insurance would cover the cost, but I needed a script from my PCP (who isn’t knowledgeable about EDS).  My PT faxed the information to my PCP who then mailed me what I thought was the same prescription (and stupidly I didn’t look). I then researched which medical supply stores had it and found three stores in my general area (one being a couple of hours away). I called the closest store — they didn’t carry it. I called the second store and they said yes, so I drove ~45 minutes… only to find they didn’t have it. They asked to see my prescription to see if they had anything similar and when I opened the envelope it literally just said “wrist splint” — no brand, no specifications, not even accurate anatomy, since it was my THUMB, not wrist!  I didn’t even bother trying the third store. I just bought it on amazon and gave up on having insurance cover it.  Fifty dollars and weeks later, I tried it on and it fit totally differently than the one my PT had loaned me. It makes my thumb go numb and causes pain in my arm, so I never wear it.

Let’s face it, chronic illness requires a sense of humor sometimes, and this was one of those moments!  The number of ridiculous barriers and mishaps was simply laughable.  Thankfully, I was able to find exercises that keep my thumb in place better, but the more I told other patients, the more I found that my experience was far too common!  We asked our Friends in the Fight to share their experiences to bring light to this issue:

Julie

I recently enrolled in a state program to get help with housework because I just physically can’t do it on my own. Although one has nothing to do with the other, it caused my state health insurance to drop my HMO. That just means the state is handling my insurance instead of a 3rd party now. For most people this isn’t an issue, but no one ever actually told me about this change! I found out when I tried to order supplies for my feeding tube and it wouldn’t go through.

The other reason it hurts me is because the occupational therapist I see doesn’t take state insurance. Because I have so many rare conditions, finding another OT who would help me (or even just not hurt me) is like finding a needle in a stack of needles! She has special training and experience that makes her uniquely qualified to treat me.

I spent at least 10 hours over 3 days on the phone trying to sort out this nightmare. That doesn’t include the hours I’ve spent sobbing because I’m in an impossible situation of choosing the health care I need or the home care I need. And it is still not fixed.

No disabled person should ever be in this position. I am only allowed to get whatever care the government allows even if they know both are necessary. I spend hours every week on the phone, sending messages, traveling to find the few specialists who can treat me, and researching new providers when old ones leave or stop helping.

I have been so physically and mentally drained from fighting so much just to survive in a world not made for me. 

**Update: since writing this, Julie reached out with some good news! “I finally got home care AND occupational therapy covered through the state program! It’s been an exhausting fight, but I finally see my OT again this Friday!”

Anneliese

@this.simple.little.life

Brand ambassador Anneliese reached out via video because, let’s face it, many brains prefer video format! Watch above to hear her story about managing pain symptoms through red tape.

Mary Kathryn Rivera 

@marykathrynpraises

@mary.kathryn.rivera

I have gastroparesis and malabsorption so I generally need IV versions of medications for the best chance of it working.  When I need to get simple things like antibiotics some doctors will say ohhh I can’t do that, you have to be admitted… My primary has no issues ordering the stuff. It’s just hard when I can’t get in.

These stories are far too common.  What these systems (and the healthy folks around us) often don’t understand, is that we don’t have extra time and energy to spend on overcoming these obstacles.  We are already so short on brain space and spoons that spending half an hour on the phone with insurance agencies might mean we don’t have the energy to do our physical therapy that day.  The stress of not knowing if we will have access to the products we need could mean that we spiral into another flare.  We may not have the money to pay out of pocket when we’re too sick to work full time.  Sometimes the costs of attempting these feats of bureaucratic acrobatics don’t feel worth the benefit of maybe getting a product that could help.  

At Mighty Well, we’re starting to think about a broader mission – could we not only create new products but also help patients access the wide range of products they need?  Our gears are spinning, so stay tuned, but in the meantime feel free to check out our favorite vascular access products (and where to find them) here!

Do you have medical supply product go-to’s, or tips for getting your hands on them?  We’d love to know!  Email listenup@mightywell.com or join our Friends in the Fight facebook group and share your story.

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4 Tips for Creating a Disability Inclusive Workplace
Chronic IllnessHealthy Work EnvironmentsMightier Together

4 Tips for Creating a Disability Inclusive Workplace

by Ariela Paulsen
written by Ariela Paulsen

Diversity and inclusion in the workplace can have benefits for all involved.  Not only does it make our society more equitable, but having diverse perspectives – and listening to those voices – is good for business.  We all bring different experiences and strengths and are mightier together.

Wanting to be more inclusive is wonderful, but hiring more diversity without shifting the culture and setup of your workplace can actually be harmful, as the new employees may find themselves in situations that do not meet their needs. If actually creating an inclusive work environment feels overwhelming, that’s ok! Change is hard, especially when you’re not sure the best way to go about it.

As a company driven by patients with disabilities, we know what it’s like to try to find the right work environment.  We’ve written about searching for jobs that fit your needs and advocating when needs aren’t met. But this heavy-lifting doesn’t need to be all on employees!  If you are an employer wanting to make your own business more inclusive for folks with chronic illness and disabilities, here are some tips to get you started:

we are capable

Inclusion of employees with disabilities may seem trickier than inclusion of folks with diverse races or genders.  Some employers worry that this may mean disabled workers won’t be able to do a good job.  It’s true that, by definition, our disabilities may make aspects of a traditional job difficult, but that does not mean we are any less capable or valuable than abled employees!  We all have strengths and weaknesses.  Someone unable to access a second-floor office may be a great leader.  Someone with a compromised immune system who needs to work from home at times may be incredibly efficient.  Someone with hearing impairments may be uniquely creative.  The label “disabled” does not actually tell you anything about an employee’s potential.  In fact, the only thing it does tell you is that this individual has had to find their way in a world that is often not accommodating; this need for frequent workarounds creates tremendous resilience, problem solving, and communication skills – all extremely valuable in a workplace!

This understanding, that people with illness and disabilities are uniquely capable workers, was the foundation for Chronically Capable, an organization that helps connect sick/disabled jobseekers with inclusive employers.  It was founded by Hannah Olson, a disabled Lyme-warrior who knew her potential was much more than what she could bring to an unaccommodating workplace.  It works like other job listing sites, but more than just searching for skill sets, resumes, and job descriptions, Chronically Capable asks its users about specific accommodations – can you offer flexible hours? Remote work? Visual aids?  Even better, Chronically Capable provides education and resources for employers, so not only can you attract jobseekers by displaying which accommodations you are able to provide now, but they can make your journey to become more inclusive much easier.  

understanding accommodations

Ok, so you want to be more inclusive and are willing to learn what that might mean for your company, but the legal side of providing the necessary accommodations for folks with disabilities has you feeling nervous.  That’s ok!  The ADA (Americans with Disabilities Act) may not be familiar to you.  This resource can help you navigate its nuances.  Nervous about holding conversations with your employees about what “reasonable accommodations” might look like?  Here is a guide to help you think things through before a meeting with a disabled employee.  And finally, here is a list of potential accommodations that can help you think outside the box!

the small stuff can make a big difference

If you have not lived with chronic illness or disabilities, you may feel overwhelmed when thinking about how to accommodate the wide array of disabilities employees face.  The good news is that there are many small steps you can take that make a massive difference.  Not only that, but most of these tweaks can benefit all employees – not just the ones with relevant disabilities!  For example, written agendas sent before meetings may help people with brain fog or hearing impairments, but are also just good for introverts.  A few examples:

  • Live captions on zoom calls and videos
  • Spaces with different lighting/noise-level options, and scent-free spaces
  • Seating (and standing) options
  • A refrigerator can help with tricky food needs, medications, or breastfeeding moms
  • Accessible presentations
  • Remote work options

now is the time

The Covid-19 pandemic has held a magnifying glass to the gears that keep our society running.  While it has come with significant pitfalls, many people with illness and disabilities have actually found their needs are better met since 2020.  Remote work allows us to be in our own space, with all the supplies and accessibility we need.  It also tends to allow for a more flexible schedule, so anyone who benefits from naps, daytime IV infusions, or frequent meals no longer has to make these needs visible.  We can work laying down or with comfortable clothes. 

We know these changes are possible.  Now is the time to make these options available even when not in lockdown.  Yes, working in person can be beneficial for collaboration, morale, informal check ins, etc.  But having the option for remote work when it’s not necessary opens the doors to many who would otherwise be unable to meet their potential.  For folks with conditions that come and go, being able to work remotely during a flare could mean the difference between continuing to work vs having to take a leave of absence.  Note that, like all accommodations, it is likely that abled employees will benefit as well!  Parents may appreciate being able to work from home when their kids are sick.  People with long commutes may get more done if not wasting an hour navigating transit.

Not only are our workplaces in a state of flux from the pandemic, but we also have a worker shortage.  Advertising your workplace as accessible to a variety of disabilities – and using this fluctuating time to actually shift your environment to be inclusive – can give you an edge to attract the talent you want!

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