'I Can't Go Out': What You Should Know About Your 'Sick Friend'

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 more of a blessing 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 in hiding something that has been largely responsible for the person I have become.

I have Crohn’s disease. To summarize, 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 I develop 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, deal with drama, or focus on that which 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 hang out 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 having a sick friend isn’t fun when you’re out doing tequila shots and I’m injecting shots of medication. 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 choose 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 have to endure any more limitations than have already been directly inflicted on me by my disease. My body is beating the crap out of me, literally and figuratively, 24 hours a day, every day, and will continue to 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 has 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, etc. Just because you cannot see my limitation or struggle does not mean that it does not exist.

I don’t want negative attention: My intention in telling anyone about my disease is either 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 what days I will feel great and what days I will feel like I got run over by an eighteen-wheeler. Please do not give up on me as a friend; a simple 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 21-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 anything and everything related to my disease. I enjoy sharing this information with others, so never be afraid to ask me a question. Knowledge is power.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.