One year, four hospitalizations, two surgeries, countless missed life experiences. When people find out I am chronically ill, they have a difficult time understanding the severity of my disease, mostly because I appear completely healthy. I suppose that is a blessing more so than a curse, because I am allotted discretion as to who knows about my secret struggle and to what degree. But six years after my initial diagnosis, I am finally ready to bring the truth public, because there is no sense hiding something so deeply responsible for the person I have become.
I have Crohn’s Disease.
In summary, I have a suppressed immune system, daily pain, fatigue, inflammation, rectal bleeding, sporadic painful lumps on my legs, joint pain, occasional anemia, limited energy, and developed abscesses and fistulas. This translates directly to: I skip out on plans, lose friendships often, nap constantly, know where the restroom is in every public place, am extremely reserved, and am tough as nails. What I have been through because of my disease has changed my personality and outlook on life entirely. I no longer worry about the little things in life, I don’t deal with drama, I don’t focus on things I cannot change because I realize there are way more important things I need to devote my limited energy to. My priorities have shifted to place my health above all else, which does not fare well socially.
Twenty-something-year olds have a difficult time understanding and sometimes even believing my excuses when I tell them I cannot hangout because I am too sick, too tired, or in too much pain. If I can get one point across to those who cannot relate, it is that Crohn’s Disease affects every aspect of a patient’s life. I understand that having a sick friend isn’t fun when you’re out doing tequila shots and I’m injecting shots of Humira. I also understand how difficult it can be to find the right words to say when I am in the hospital, recovering from a surgery, missing classes, or rapidly losing weight because I am too sick to eat. I didn’t chose this disease, but I have learned to cope with it, and in doing so I have accepted the fact that my social life will suffer.
But is that really what I should have to do? On top of everything else, from medical tests and infusions to dietary restrictions and way too many doctor’s appointments, I finally realized I should not endure any more limitation than has already been inflicted on me directly by my disease. My body is beating the crap out of me, literally and figuratively, every day, twenty-four hours a day, and will do so for the rest of my life. I don’t ask for much, especially from friends or acquaintances, out of fear of becoming a burden, but I do ask that when dealing with someone who suffers from a chronic illness, you remember these few things:
Looks can be deceiving: Crohn’s Disease is an invisible illness, as is Multiple Sclerosis, Lupus, Rheumatoid Arthritis, the list goes on. Just because you cannot see my limitation or struggle does not mean that it does not exist.
We don’t want negative attention: My intention in telling anyone about my disease is for emotional support or out of necessity as it relates to school or work. Never have I ever sought negative attention or special treatment because of my health condition.
I am not embarrassed, so you shouldn’t make me feel that way: It took me years to come to terms with the idea that my body fails me. If you see me going to the bathroom multiple times in an hour or sleeping an ungodly amount during the day, please do not make me feel worse than I already do. Acceptance is an extremely difficult part of having a disease and is required not just of the person with an illness, but of others as well.
I don’t intend on cancelling plans, it just happens: I am sure anyone that knows me can attest to the fact that I have a tendency to bail out on plans last minute. The unpredictable nature of my disease doesn’t allow me to know which days I will feel great and which days I will feel like I got run over by an eighteen-wheeler. Please do not give up on me as a friend; an invitation means a lot.
I still do productive things: I just graduated college with a 3.93 overall GPA, have a job lined up upon completion of my master’s degree, work out as much as possible, and for the most part, am a normal twenty-one-year old. Life goes on with a chronic illness. Not all days are bad days.
I am knowledgeable and want nothing more than to inform you: Over the course of my time with Crohn’s Disease, I have spent countless days and weeks in bed. Thank goodness for the internet, because it has allowed me to put that time to good use by researching everything and anything related to my disease. I enjoy sharing this information with others, so never be afraid to ask me a question; knowledge is power.