Why I Created a 'Perfect' Persona When I Became Ill


I like to compare invisible illness to that of a juggling circus clown. More often than not I find myself juggling my social life, my education and my work commitments all whilst appearing relatively well to the world. Unbeknownst to them, on the inside I’m crumbling apart and the effects of all this juggling is taking its toll on my body. To add further to the saga, the symptoms I experience are never two the same – some days my joints pop out of place and my brain fogs, whilst other days it’s fatigue, pain and muscle cramps that stop me from walking.

Developing coping and pacing techniques to ease the symptoms of chronic illness is vital and key to my physical and emotional well being. However as a result of that, it means people can see that’s there’s something wrong.

When this journey began five years ago, I didn’t want to face the questions related to being ill. Overnight I went from being a talented sports woman to someone that could barely walk more than 100 yards without feeling intense pain burning throughout my body. I therefore couldn’t accept the use of my crutches as pain management and continued to live life as normal, adjusting my daily tasks to compensate for the pain.

And so that cycle continued for another four years. In that time I completed my undergraduate degree, and I had two surgeries whilst I was at school. Yet, no one other than my close friends at university knew about this. I sat long exams in pain, my joints seizing in lectures – all because I couldn’t face answering questions because that would ruin this “perfect, put together” persona that my imagination had created for myself. So I stumbled through.

Fast forward to the end of 2016 when everything begun to take a dip. By this point, I’m a further two surgeries later, in the midst of a really intense postgraduate training scheme and struggling immensely. However this time, I cannot avoid not asking for help because it’s beginning to physically show – I’m losing weight, I’m noticeably dragging myself to lectures and barely concentrating whilst I’m there as the pain is so intense. I’m also struggling through exams and I’m in a constant state of anxiety. Asking for help was my only solution. So I braved the questions with my doctors, other health professionals and staff at my university.

Talking and discussing gave me the courage the be OK with showing that I’m not OK. Fast forward six months, and I’m closer to diagnosis. I wear my braces, tape my joints and carry my crutches everywhere I go. I do my exercises and stretches in public if that’s what needs to be done and I ask for help when I need it. If questions arise then so be it and I do my best to answer them. My grades aren’t as high as they were on my undergraduate degree, but that’s OK, because I’m still hanging in there.

Whilst wearing all this tape and using my crutches isn’t pretty, it’s my new normal that I’m learning to embrace. Chronic illness is a whole grieving process with many peaks and troughs, however, I finally think I’m coming out of the other side.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: JANIFEST

TOPICS
JOIN THE CONVERSATION

Related to Marfan Syndrome

hands holding, showing wedding ring

True Love: My Marfan Tale

It is universally agreed that everyone must have at least four dates by the age of 16. It is also universally agreed that I was too tall to have dates. At 16, Marfan syndrome made me a foot taller than all the other girls. I was underweight, flat-chested, and had a personality so strong it attracted [...]

Live Video: Lizzie Velasquez - Rare Congenital Disease

Live Q&A with speaker and author Lizzie Velasquez.
stars hanging from the ceiling of a children's hospital

I’m 32 and Still See a Doctor at a Children’s Hospital

Today I had my annual cardiology appointment, but I don’t go to your typical cardiology clinic. Mine is located at a local children’s hospital. When I was 2, I was diagnosed with a heart murmur and sent to this same hospital. I was then diagnosed with Marfan syndrome and seen there throughout my childhood. Thirty years later, I’m still [...]
Top view of female hand holding white christmas gift box wrapped with red ribbon. High angle view of woman showing xmas present on rustic wooden table with fir branch on top.

6 Gift Ideas for a Person With Marfan Syndrome

With the holidays just around the corner, and the stresses of finding that perfect gift to give, I decided to do a post for a special group people. When you have a rare disorder like Marfan syndrome your days can be complicated, and painful. Life can be made slightly uncomplicated with certain products that many Marfan [...]