Mighty Well
  • Shop
  • Learn
  • Journal
  • Join Us
  • Who We Are

Mighty Well

  • Shop
  • Learn
  • Journal
  • Join Us
  • Who We Are
Chronic IllnessFeaturedFriends in the Fight

Love & Illness: Conversations with Spoonies and Their Partners

by Ariela Paulsen February 12, 2020February 12, 2020
written by Ariela Paulsen
Love & Illness: Conversations with Spoonies and Their Partners

This Valentine’s Day, we want to celebrate love, and recognize the role that illness can play in romantic relationships.  When illness impacts your life, it inevitably ends up impacting your partner’s as well. Partners have to navigate the tricky boundaries between lover, friend, and caretaker.

It takes a lot of work and crystal-clear communication to create equal, supportive, loving relationships. But when it works, love with spoonies can be incredibly strong.  Vulnerability, communication skills, and empathy are all deepened by the experience of chronic illness, and this can bring relationships such depth!  

We asked some of our Friends in the Fight to share their own stories of love and illness:

Tiffany and Caleb

@ustheremingtons

What is a challenging thing about being in a relationship shaped by illness?

One of the most challenging things is finding the best way to communicate as a patient and caretaker without tarnishing the romance of the relationship. For instance, reminding your partner to take their medications and do their treatments can feel like a demand from a parent which then can trigger resistance and cause frustration for both parties. Learning about how one another best receives support is key! The financial burden that inevitably comes with a chronic illness is also something that can cause tension in the home — nothing to the fault of the patient. It just forces most to be a little more strict and resourceful when it comes to making ends meet.

What is one surprising thing that has brought moments of love and intimacy?

Being in the hospital actually brings us closer, as weird as that sounds. It shifts things into perspective and a lot of worries, doubts, and insecurities are thrown out the door because we are forced to live in the present and honor each moment with a deeper sense of gratitude. It gives us time to reflect and really share the rawness of our love. It is a different type of intimacy — a mental and spiritual closeness.

What is a funny thing?

The level of privacy in our lives is pretty slim to none — however, we choose that for our own selves. We love to share moments of our lives openly and vulnerably on social media. We appreciate the support and responses from our community but what we get most jazzed about is the ability to create a space for others to not feel alone. It’s pretty funny that some of the strongest friendships are formed because of the topics like shapes and size of poop, the process of sperm analysis for IVF, and color/consistency of mucus.


Ari and Dan

What is a challenging thing about being in a relationship shaped by illness? 

We struggle to balance saving spoons while honoring the fun things that we want to do together.  I always want Dan to feel valued equally, so I’ll push myself to go do things he’s excited about, and end up paying for it.  It has also been a challenge that I have such a limited diet. Dan’s first love has always been food, and he feels sad every time he can’t share it with me.

What is a surprising thing about it that has brought moments of love and intimacy? 

Dan says, “Being sick for so long makes you better at being sympathetic to other people’s needs.”  In general, we were forced to have a very open relationship from early on, because I had just begun a new round of testing and tracking and trying to figure out what was wrong with me.  I also find that, after a really bad episode, if he was able to be there and support me, it brings an intense closeness. (Dan says “no, I don’t really feel intimacy after you’ve blown your guts out in the bathroom!”)  We both value rest, so since the very beginning of our relationship, we’ve spent a wonderful amount of time just cuddling together, listening to music. It feels so loving and intimate, without needing words or even eye contact.

What’s a funny thing? 

Dan’s immediate response: “The bumblin’!  You just bumble around any time I’m in the house!  I’ll be in the other room and just hear ‘Ouch! Crap!  Oof!’” We really do find SO MUCH to laugh about in illness!  Before I had a good handle on things, I would get extreme fatigue and have to lay down immediately, and not be able to get back up.  Dan would come home to find me flopped on the floor, face first into a chair, etc. He’d remark, “Oops! You’ve flopped again!” and then laugh and take a picture.  He also loves writing down the silly things I say when deep in brain fog or exhaustion so that he can read them off to me later and laugh about it. We actually made a calendar this year that included pictures of me flopped in various places, with his collection of silly quotes!


Allie and Calvin

What is a challenging thing about being in a relationship shaped by illness?

When Calvin and I first started dating, I was in the midst of rigorous treatment and was experiencing some of the most debilitating symptoms of my life. The way I was able to contribute to our relationship then looks very different than the way I am able to contribute now. We’ve had to learn to gracefully adjust expectations of each other and also to openly communicate about our needs and abilities, which are changing all the time! 

What is a surprising thing about it that has brought moments of love and intimacy? 

Actively building in time for rest is a really important part of my daily routine. No matter what physical or mental place I’m in, when I can share some of that rest time with Calvin I feel so fortunate to have a quiet moment, just us, to share. I think if rest wasn’t such a vital part of my routine, that quiet time might be harder to find. 

What’s a funny thing?

I still deal with pretty bad brain fog and I lose things all the time. We’ve had some great adventures as a result of my forgetting important things in strange places, and I love that we’re able to laugh about it in the moment every time.

Stay tuned for the story of our founders, Emily and Yousef!

0
FacebookTwitterPinterestEmail
Ariela Paulsen

Ari struggled with a wide array of health problems for decades before being diagnosed with EDS/POTS/MCAS/etc at age 25. She began writing as a way to heal while spreading information and helping others through their own journeys. She loves being part of the Mighty Well team, sharing the stories and strengths of spoonies everywhere!

previous post
Beth Gore: Speaking For Those Who Can’t Speak For Themselves
next post
Valentine’s Day Special: a story from Mighty Well co-founders Emily and Yousef

You may also like

Surviving Allergies in the Time of Covid-19

May 26, 2020

Caring For Your Whole Self: Conversations with Ali...

January 28, 2019

Mighty Well Mask FAQ

July 2, 2020

Feeding Tube Awareness Week: Kayla’s Story

February 13, 2020

Looking Forward When You Fall Back

March 29, 2017

Meet Mighty Model, Shannon Maguire: Gastroparesis Warrior

June 3, 2019

Conversations with Lisa Cipkar: Patient and Practitioner

January 20, 2020

Overcoming Cancer at 25

April 9, 2019

Dating With An Ostomy

August 17, 2017

2019 Holiday Gift Guide for Patients with Chronic...

November 11, 2019

About Us

Hi, We're Mighty Well.

The mission of Mighty Well is to help patients and their caregivers turn sickness into strength. We are leading the global charge that changes the perception of patients from victims to fighters. We do this by improving the experience of being a patient. We create the products we wish we’d had: functional and stylish apparel and accessories that you can wear with confidence - and content that can help you get through the good times and the bad. It’s wellness you can wear.

Keep in touch

Facebook Twitter Instagram

Instagram

No images found!
Try some other hashtag or username

Recent Posts

  • Myasthenia Gravis Awareness Month

    June 22, 2022
  • Body Image and Mental Health in the Time of Covid

    June 16, 2022
  • Accessing Medical Supplies

    June 10, 2022
  • 4 Tips for Creating a Disability Inclusive Workplace

    June 3, 2022
  • Halsey Celebrates New Diagnoses

    May 26, 2022

Categories

  • Adaptive Wear
  • Chronic Illness
  • Featured
  • Friends in the Fight
  • General Wellness
  • Healthy Work Environments
  • Lyme Disease
  • Medical Devices
  • Mightier Together
  • Mighty Models
  • PICC Line
  • Popular Posts
  • Relationships and Support
  • The Undefeated
  • Treatment and Care
  • Uncategorized

Tags Cloud

Adulting Be Your Own Advocate blm Cancer Chronic Illness coronavirus coronoavirus covid-19 Daily Brain Fog Fix Diabetes Dysautonomia EDS feeding tube Feeding Tubes feeding tube supplies Gastroparesis holidays how does a feeding tube work immuno hoodie invisible illnesses Living Mighty Well Living With a PICC Living with a Port lyme disease MCAS Medications MedPlanner mental health Mental Illness mighty mask Mighty Pack mighty well mask Misdiagnosed neurodiversity New Years Organization Tips PICC PICC line cover PICCPerfect POTS Self-love self care case Support Systems TPN Tube Feeding

Our Story

Mighty Well - Founder - Emily Levy - Our Story

 

It all started with a cut off sock, a cute hockey player, and an 8 AM finance class. Oh, and a PICC Line. That moment inspired us to launch our first product, the PICCPerfect PICC Line Cover.

 

We know it stinks to feel defined by a diagnosis or feel like just a name on a doctor’s chart. Sounds like you? Read how our founder turned sickness into strength.

Recent Posts

  • Myasthenia Gravis Awareness Month

    June 22, 2022
  • Body Image and Mental Health in the Time of Covid

    June 16, 2022
  • Accessing Medical Supplies

    June 10, 2022

Join the Fight

Mighty Well's Facebook Page

Find us on Instagram

mightywell_

One positive that came out of the pandemic was tha One positive that came out of the pandemic was that many of us were able to have flexible working arrangements. As more states lift restrictions, heading back to work after months of working from home can be a huge adjustment for so many of us. Allowing time in our schedules for commuting, brushing up on our social skills, and making sure to have access to our medical supplies are just a few things we need to prepare for.

📸 Mighty Well ambassador @ameliablackwater headed back to the classroom last week and is working on finding a happy balance of working, socializing, and finding time for herself. 

If you've returned to work, what was the hardest part about making the transition back? 
.
.

#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Autism #WFH #RemoteWork #Telecommute #MightyWellMask #Pandemic
Before you move forward always be sure to check th Before you move forward always be sure to check the price tag 💵
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #MentalHealth #MentalHealthAwareness #Anxiety #Depression #PTSD
Life is full of uncertainties. But there will alwa Life is full of uncertainties. But there will always be a sunrise after every sunset 🌅

"The only certainty in life is uncertainty. I challenge you to embrace it. Even if it's just for a bit" ~@kali_rarerootedwarrior ☺️

Featuring: The Mighty Pack & Undefeated Hat
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Gastroparesis #EDS #MastCellDisease
We really love this message from @lizandmollie. In We really love this message from @lizandmollie. In fact, we couldn't have said it better ourselves 🤗 Chronic illness is filled with ups and downs and everyday will look a little different. Know that you're doing your best even on the days that you are flaring, in pain or fatigued. Remember that we are here to support you on the good days, the bad days and all the ones in between 💚 
. 
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #ChronicFatigue #MultipleSclerosis #Lupus #SickleCellAnemia #Endometriosis #POTS
Going into a medical procedure is always a little Going into a medical procedure is always a little scary. The best way to minimize fear and anxiety is to go in as prepared as you can! If you are feeling nervous for an upcoming PICC line placement procedure, head to our latest blog (link in bio) for some confidence boosting tips so you can feel ready to go! 

📷 Friend in the Fight @zebrajemma loves her PICCPerfect PICC Line Cover. It keeps her PICC line in place without adhesives and is so comfortable 🤗
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #IVIG
You can hardly wait to tell everyone what happened You can hardly wait to tell everyone what happened and  suddenly start talking and realize you don't know where the story is going...has this happened to anyone else lately 🙋‍♂️We've been there! Brain fog, perhaps the most universal aspect of illness, is exhausting. Cognitive disorders can be frustrating but take solace in knowing that you are not alone. We've all experienced that foggy feeling 🌫 and although it's not permanent, it can arrive quickly and definitely overstay its welcome. 

Looking for a little help getting the fog to lift? Our Brain Fog Fix Planner is more than just a reminder system. It includes space to track daily symptoms, hydration, thoughts and moments of gratitude amidst the daily challenges and is brought to you with input from our Friends in the Fight® Click the link in our bio to find out more. 
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #BrainFog #ChronicFatigue #CognitiveDisorder
We've got your back! Our Mighty Pack is the first We've got your back! Our Mighty Pack is the first medical backpack designed by patients, for patients. Our backpack is perfect for wheelchair users, as it has multiple strap locations to allow for flexibility. Nobody needs to know that you are carrying or wearing your essential medical devices and supplies. As patients ourselves, this is a product that we wish we’d had! 💪💚 Best of all this can be purchased with most FSAs (Flexible Spending Accounts) and HSAs (Health Savings Accounts) Click on the photo to take a look inside the Mighty Pack. 

📹 We are all smiles over this video of Mighty Well ambassador @rebellious_story & her dog Sherlock 😍
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #Community #Health #Wellness #ButYouDontLookSick #InvisibleIllness #ChronicPain #ChronicIllness #ChronicIllnessWarrior #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #LivingwithChronicIllness #Crohns #InfusionPump #MedicalBackpack #DiabeticLife #Gastroparesis #EnteralNutrition #Wheelchair #Tubefeeding #MedicalSupplies #TubeFed
The school year is quickly coming to a close and w The school year is quickly coming to a close and we wanted to send a Mighty shout out to all the students who worked so hard this year despite the challenges of COVID 🙌 We know that it was a challenging year with limited in-person learning, social distancing, and the requirement of face masks. We are so proud of all of you and you should be too! 💚

📸 Featuring The Mighty Well Mask
.
.
 #MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #KeepFighting  #SupportSystem #PICC #PICCLine #Port #Pandemic #HomeSchool #Graduation #SocialDistancing
I’m proud to be trans and I’m proud to be disa I’m proud to be trans and I’m proud to be disabled — because you can’t put a boundary on being yourself ~@thedisabledhippie
 
Happy Pride Month to all of our Friends in the Fight in the LBGTQIA+ community 🏳️‍🌈
.
.
#MightyWell #YouAreMighty #FriendsInTheFight #LiveMightyWell #Undefeated #InvisibleIllness #AutoimmuneDisease #ChronicPain #ChronicIllness #LymeDisease #LymeWarrior #Spoonie #SpoonieLife #SpoonieCommunity #AdaptiveWear #Pride #LBGTQ #Transgender #LoveisLove #NonBinary #BiSexual #GayPride #Instalove
Follow on Instagram
  • Facebook
  • Twitter
  • Instagram
  • Pinterest
  • Linkedin

Mighty Well © 2018 All Rights Reserved


Back To Top