The top 5 things I wish people knew about life with a rare disease
I have Eosinophilic Esophagitis (EoE). According to the American Partnership of Eosinophilic Disorders, EoE is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus. As Rare Disease Day approaches for the year, I'd like to share what I wish people knew about my chronic illness.
1. My illness requires an extremely strict diet
I have diagnosed food allergies, sometimes with reactions that are unprecedented to most emergency rooms. This means I can't cheat. Not even a little. Not even just one bite. And cheating doesn't just mean eating the food outright. I have to watch out for cross contamination in my food preparation and accidental contact from others' food. What this leads to is a lot of home cooking with specialty ingredients that are sometimes 5-10x the price of their "normal" alternatives. It also means I can't easily share a kitchen with roommates due to concerns of cross contamination or go out to eat without thorough research ahead of time.
2. There is currently no FDA approved medications to treat my disease
There are medications that help-don't get me wrong. However, without FDA approval, the medication techniques are often "unique" uses of existing medications and treatment methods that have not been tested. In many cases, by treating your symptoms now, you are creating issues for later than are yet to be understood. Additionally, as a rare disease, there is little funding or interest in developing medications to treat the illness.
3. I constantly am worried about triggers
EoE triggers are not only food-they can be environmental too. What this amounts to is a laundry lists of items you need to avoid at all times or else face the consequences (for me, that can be anaphylaxis). This leads to checking everything: food, lotions, shampoos, drinks, medications (I actually have to use special toothpaste because normal toothpaste makes my tongue itch and leads to flare ups). Anything that comes in contact with my body is a potential threat. This can be extremely damaging on your mental health as your are constantly worried about causing flare ups.
4. I may be young, but that does not mean I'm healthy
This is usually something I can brush off pretty easily from strangers or even acquaintances, but my chronic illness is never going away, so stop trying to tell me how I don't get it as a young person. This is most frustrating with medical professionals. I've actually had doctors question why I would be interested in blood work when I'm so young even after disclosing to them my medical history. By not taking chronic illness patients seriously, it leads to longer diagnosis times and often, more pain than was necessary for the patient.
5. I'm generally optimistic, but sometimes I need the support of family and friends
I've run into every type of chronic illness warrior, from the person who now refuses to go out, to the person who downs medication to live a "normal" life, to the person who had to stop working, to the person travelling the world. As an activist, I generally look to be optimistic and balance my life between my chronic illness and normalcy as much as possible. This doesn't mean I'm perfect, though or that I'm always sharing the whole picture to everyone all the time. If I shared every symptom I had each day, it would wear down on those around me as I know it does to me daily. That's why I try and keep a positive attitude on the good days, so that I can lean on those around me when I know I don't have the energy to pretend. This does not mean that good days mean normal days. Unfortunately, there are no normal days with a chronic illness. So when I reach out for help picking up some ginger ale to help my stomach or ask for someone to pick up my prescriptions, know that I really do need the help.