Blog: Living Mighty Well

A Fighter's Journey: Living With a Rare Illness

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I’ve pressed the delete button on my keyboard a million times by now… (why you ask) That’s what a writer aspires for. A statement left unanswered, and by the end to be resolved. As an avid writer, you wish to be interesting, unusual and unique. Things I wish not so much to be as a chronic illness patient. I wish for this medical mess to be resolved, but as a realistic optimist, I do not see this life of illness going away anytime soon. Unanswered, questionable, curious, and unexplainable are all words that describe living with a rare illness, or a few.


You never assume you’ll be sick, or not for a long period of time. You assume that’s for the elderly or rare cases. Little did I know or anyone for that matter, I am one of those rare cases. Growing up I was an energetic, an athlete, a student, an artist and simply had everything I wanted or needed. I was healthy until about the age of 12. I didn’t realise that the life I was living before would become so distant. A great deal of my time now consist of hospitals, medical procedures, and traveling to Minnesota. At the time puberty strikes, I experienced a great load of unusual symptoms that could not be controlled by medication or any medical professional. Those symptoms didn’t seem so disturbing at the time, but now has left me as a full time patient, pill taker, advocate and most importantly, a fighter.

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For everyday since the start of my symptoms, I have woken up with swollen lips, felt an overwhelming amount of dizziness, and have stomach issues. Lip swelling led to daily anaphylaxis, dizziness led to passing out unconsciousness and stomach cramps led to the inability to eat to sum it up in a few short words. It also led me to the Mayo Clinic of Rochester, MN at the young age of 16. After attempting to manage my life for a few years, doctors near by were unable to provide the care I was needing.

Multiple doctors, test, and appointments...saved my life or were attempting to at least. On my case, I see an Allergic Disease Doctor, a Pediatrician, Gastrointestinal/ Digestive Disease Specialist, an OBGYN, Cardiologist and a RN. Thankfully, I have been diagnosed with Postural Orthostatic Tachycardia Syndrome(POTS), Autoimmune Progesterone Dermatitis Disease (APD), Mast Cell Disease (MCAD), and Motility disorder. If that isn’t a mouthful, I am not sure what is...probably my allergy list!

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POTS is more common than you think, basically it is the dysfunction of the nervous system. APD, on the other hand, is only diagnosed in 40-50 people worldwide and lucky me, I am in that group! This condition means that I am allergic to myself and the hormones that my body produces. MCAD is when the Mast Cells in the body do not respond or work correctly, resulting in an allergic reaction. A work in progress, but Motility disorders are the improper function of the gastrointestinal tract. As if being 17 now wasn’t enough, the Mayo Clinic is in trial with trying to control my morphing body.

The illnesses I live with most definitely alter my life, they have changed me, but they do not define who I am. I am Emma. Living with chronic illnesses that are rare is a learning experience. Somedays it feels as if I am stuck in quicksand, that the waves of the ocean are swallowing me up, and that life is me trying to move a mountain. I have learned that for every set back or hard day there is a comeback in store. Learning to accept the things that I cannot change is making the journey easier.

Here is my advice to you:

1. Have a voice. Be visible even if your illness is invisible.

The only way to be heard is to be loud and to share your story. It can be difficult, but likewise everyone has a story to share. A story full of failures, greatness, struggle, and overcoming. You never know who is listening, so it is important to share! You just may empower someone else to share. Sharing your story brings awareness, and the more awareness means change.

2. Do not back down.

There are days when you will be defeated. You will have days when giving up feels easier and the illnesses will feel as if they have conquered you. It is completely normal and reasonable to feel this way. If you are living with an illness, this is no walk in the park. You must acknowledge that even though there are negatives, not everything about being ill is. Some of the most amazing people, experiences and opportunities will come because of this. Do not give up, fighting is worth it.

3. Treat yourself and others with love.

Being ill is unpredictable and hard on you, but your family and loved ones are watching you go through this battle. I didn’t understand how difficult it is to be an observer instead of the patient until a chronically ill friend came to the US to meet me from Europe, and she had an attack. It is extremely heartbreaking to feel helpless when you want to do so much to help. Those who watch your illnesses attack you, do not experience the symptoms, but watching suffering is a pain of its own. Be true and have open dialogue amongst each other. Communication is key!

4. Be Educated. Be the Boss.

You know your body better than anyone. Doctors may have gone to medical school, but they do not physically experience what you feel. Express what you feel, over and over. Your doctors are very smart, but they do not have the power to read what you’re thinking! Research, educate yourself and be your biggest cheerleader! You must go above and beyond for yourself in order to receive the care that you need and deserve!

5. Don’t wait until it's too late

This goes for Epi-Pens, but also many other things! Life is truly short and not as long as we wish it to be. If you are the one living with an illness, you may already be familiar with this. Life is short, so take advantage of the days where you feel okay or good. Don’t wait for a good day, enjoy what you have and use everyday. If you are not the one currently fighting, care, you never think that you will be the sick one, but in a matter of seconds it could be you in the hospital.

6. Remember who you are!

Typically you would stop listing at 5, but nothing about living with chronic illnesses is normal, so here is number 6: Remember who you are! You are not just a number, you are not a static, or just someone taking up space in a hospital room. You are unique, beautiful, and special. As much as chronic illnesses can be controlling, it is not defining of who you are as a person. Remember to love yourself, you are only human.

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Say hello to Emma or follow her on instagram at: empowerwid51

 

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