“Just because you have a disease that may be similar to another doesn’t mean you understand what it’s like to have the other disease.”
I recently made this statement regarding an incident that occurs all too often in chronic illness communities. You’ve probably seen it before: person with disease X decides that person with similar (but not identical) disease Y is not nearly as sick as they are. Person with disease X then also decides that since her similar disease is so much worse, she gets to put down person with disease Y and make statements about person Y’s disease that implies she understands it. Which she doesn’t. Because…
You cannot understand what it’s like to have a disease that you don’t actually have.
I’m not talking about cardiologists understanding heart disease or rheumatologists understanding arthritis (although I would also argue that doctors generally don’t understand what it’s like to have the diseases their patients have, with some exceptions.) I’m talking about the patient experience, an individual experience that can never fully be compared to another person’s experience. Even two patients with the exact same illness are likely to have different experiences based on a variety of factors, such as the severity of their disease, access to proper medical care, and so on.
It makes little to no sense to start comparing diseases, yet it’s something I see in the IBD community all the time. I often wonder if this happens as frequently in other communities as it does here. It certainly isn’t appropriate or helpful, and doesn’t seem to have much purpose other than someone deciding they’re the Sickest of All Time™. I had the misfortune of attending an in-person support group that did this, and it’s pretty much turned me off of ever going to another one.
Let me be clear:
If you have Crohn’s disease, you do not understand what it is like to have ulcerative colitis. If you have ulcerative colitis, you do not understand what it’s like to have Crohn’s disease. It doesn’t matter that the same part of your digestive tract is affected, or that you had the exact same surgical procedure, or that you’re jealous because someone told you that people with the other disease are all better off than you are. You still do not know what it’s like.
If you also have ulcerative colitis, you still don’t know what it’s like to have MY experience with ulcerative colitis. You aren’t in my body. The same applies with any other disease. You can have a million similarities with the patient experience of another person being treated for the same disease that you have. It doesn’t mean you are that person.
It is very difficult to have any chronic illness. Putting down people with other diseases and their experiences is not going to cure you. Claiming to fully understand someone’s patient experience without having lived it will not make you any wiser. Your experience is only your own. Instead of claiming to know exactly what someone is going through, ask them what they’re going through. Instead of telling someone they can’t possibly be as sick as you, understand that you have no idea how sick anyone really is, especially a stranger on the internet. And above all, try to be kind. If you wouldn’t want to be on the other end of what you’re saying to someone, it’s probably best to not say it at all.