What My Peers Don't Understand About Autoimmune Hepatitis


While struggling with a rare, chronic disease at the ripe age of 17 may seem exciting from an outsider’s point of view (I mean, I get it – days off school, coming to class late, extensions on work, an excuse for when I don’t do my homework and just the sympathy in general), I can assure you from an insider’s point of view it’s one of the most twisted realities you can face at this age, or any age for that matter. So as my peers continue to roll their eyes when I walk into class late, they still fail to understand what goes on behind closed doors. And that is too much to articulate in one sitting.

It’s hard to grasp the concept that this isn’t an illness I can just shake, that it won’t go away in a few weeks, not even in a few years. The evil truth is that I will be sick for potentially the rest of my life.

While this is all hard to grasp, what’s even harder to grasp is that the medications I must take to stay functioning have more symptoms and side effects than the disease itself. A cruel mix of making yourself more sick with immunosuppressants and steroids to stop your own body from attacking itself. Autoimmune hepatitis could be genetic or environmentally triggered, but it is not my fault, so please don’t stare when I say the word “hepatitis.” It just means inflamed liver; I’m not contagious. Please don’t stare when my cheeks look puffy from the steroids I take to stay alive. Please don’t stare when I’m exhausted from walking up the stairs. Please don’t stare at my bruised body. Please don’t stare at the growing hair on my face and the loss of hair from my ponytail. Please don’t tell me to suck it up. Please don’t tell me I’m over-exaggerating the symptoms. Please don’t tell me to stop complaining. Please don’t tell me you know how I feel. Because you don’t. Unless you are struggling with a chronic illness, you truly will never know how it feels to ache from head to toe inside and out each day while carrying the weight of your body on your knees, which feel like they will give out with each step you take from the joint pain and fatigue.

As those of us with this disease grow more aware that “normal” is a far-fetched concept from our reality, it never gets easier. When you realize you can’t remember the last time you felt “normal,” your new normal becomes an aching body at the age of 17, and all you can do is watch everyone around you continue to run through their lives with great fear that you may not ever feel normal or healthy again.

None of this ever feels real until it hits you like a ton of bricks at the worst times, like when you are trying to keep up with your social life and you just can’t go out anymore or while you stand in the shower quietly sobbing, wishing you never took good health for granted.

But we mustn’t sit around and feel sorry for ourselves. We don’t look sick, so we should stop complaining, right? How can this all be fair? The truth is, it isn’t fair and this sucks big time. Unfortunately, most people just won’t understand how serious this really is because we put on a brave front. All I can say is…this isn’t fun or glamorous. It’s a vicious cycle of doctor appointments, medication and hope. Hope for a better, healthier future. But we must continue to push through the hard days with positivity and strive to live a somewhat normal life; after all, is there really such a thing as normal? We are all unique in our own way.

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

TOPICS
JOIN THE CONVERSATION

Related to Autoimmune Hepatitis

woman smiling

What You Don't Realize When I Refuse to Have a Drink With Dinner

No, I’m not an alcoholic. I have autoimmune hepatitis. Please don’t get offended when I refuse to have wine or beer at dinner. Forgive me for canceling our plans. I’m exhausted 24/7 and constantly struggling to maintain my health. My condition is genetic or environmental, but the doctor’s don’t have a clear or concise answer. [...]

I Have a Rare Disease, but That Doesn’t Mean I’m Alone

It just occurred to me that I have a rare disease.  I guess it would be more accurate to say that the weight of having a rare disease just hit me. It landed on me like a bucket of green slime from Nickelodeon in the 1990s, with potentially a crowd full of people pointing at me [...]
Microscopic Image of Bone Marrow Cells Dividing

My Reflections After a Bone Marrow Biopsy

I already have a diagnosis of autoimmune hepatitis, but in conjunction I have had (from the beginning) pancytopenia, or low blood count of cells. After a recent liver biopsy, the good news was that my liver damage has not increased, however that left the continued question of what is going on with my blood count if it’s [...]
Drawing of eye with code composite over it

Why I Want to 'Be Seen' for the Challenges I Face With Illness

Today I want to celebrate. And the truth is, I’m too exhausted. Too tired to celebrate or feel satisfied. I have crawled across some make-believe finish line of the past month, which has left me tattered and torn, strewn on the ground reaching for a cup of water. In the fantasy of my mind I [...]