Raise your hand if you’ve ever hidden your symptoms from others—or even from yourself.
Just about everyone living with chronic illness has likely done this, whether knowingly or not. The pull to feel normal and the fear of being judged are 100% valid. We all know that this world can be unfriendly to those of us managing chronic conditions like autoimmune disease.
But we need help! We have to hang onto the hope that there are peers and doctors out there who understand, who can give us the support and treatment we need. In Morgan’s story below, she describes the experience of avoiding help and offers insights she learned along the way.
Morgan's Story
Hi, I’m Morgan. I am 21 years old, and I have Crohn’s disease. I was diagnosed when I was 16, although I can say I definitely showed symptoms much earlier.
As a teenager you will do almost anything to fit in, to not be seen as the slightest bit different. So, as a naïve 16 year old, I hid the IV bruises with long sleeves, and the pain I was in with fake smiles. I didn’t even tell my family something was wrong for a few months. All I knew was I was having severe pain after eating, and low grade fevers every evening after getting home from the beginning of my junior year of high school.
“It’s possible to pull through and
live with a chronic illness.”
Once I finally told my dad something wasn’t right, he took me to my pediatrician. She had no idea what was going on, so she referred me to a gastroenterologist. The GI then scheduled me for my first colonoscopy and endoscopy, which was how I was diagnosed with Crohn’s. I went to my follow up appointment not knowing what to expect, and left a completely changed person.
I had never heard of Crohn’s disease before. I was terrified. I should have been worrying about boys and my upcoming tests for school, not a diagnosis that changed my life overnight. But, that’s what happened.
What makes it even worse, is I knew absolutely no one with a chronic illness, much less Crohn’s. It was such a battle to get myself out of bed in the morning and go to school. I had pretty good grades, but my work ethic fluctuated. Some days I would give everything I had to my school work, and others, not so much. It was hard but with determination, I did it. So yes, it’s possible to pull through and live with a chronic illness.
“Prior to getting myself the help I deserved,
I was miserable around the clock.”
I didn’t start a biologic or regularly start seeing a GI doctor for a really long time; I’m talking years after my diagnosis. I saw a GI once in 2016, which is when I received my diagnosis. But I didn’t start seeing one again or receiving treatment until 2019. Thinking back on that is very shocking for me.
Prior to getting myself the help I deserved, I was miserable around the clock. Nausea, vomiting, unbearable pain, fevers, aches.. I had it all. Once I got help, I felt relief from some of my symptoms very quickly.
If I can give you two pieces of advice, it would be:
- Surround yourself with people who love you, support you, and care about you. With the right support in place, life starts feeling a bit easier and less heavy.
- Get yourself the help you deserve. Don’t stay in pain and agony. While I know everyone’s experience with IBD varies, I promise you, getting help is worth it. If you know you need help, but don’t know where to start, the Crohn’s and Colitis Foundation has so many resources available to help patients with IBD.
Lastly, whether you are newly diagnosed or have been for a while, please remember there is ALWAYS hope. You just can’t stop fighting for yourself. Please hang onto hope.
-Morgan Schoepfer
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.
Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!
