Month: July 2017

Empowerment is a word often heard in chronic illness communities. So is bravery. While these words take on different meanings in each community, there is a common one found in the community I spend most of my time in. What could be more brave and empowering than for a person with IBD and an ostomy to show off her scars? To “own it” and show that she isn’t embarrassed, or abnormal, or disgusting? To say “like it or not, here I am, I’m not ashamed?”

Well, I’m not ashamed. I am brave, strong, and confident. And I don’t want to show you my scars.

It’s not that I’m embarrassed. I willingly chose a permanent ostomy over a jpouch, knowing that I would be left with a visible appliance. I guess I could be defined as abnormal, but I don’t choose to define myself that way. I’m sure as hell not disgusting, or disgusted by my post-surgery self. Do I feel ugly sometimes? Sure, but my surgery has nothing to do with it. I look much better than I did when I was spending hours in the bathroom every day, I’ll tell you that.

So why don’t I want to show my scars to people? I don’t think it needs an explanation, other than to say that it’s just not something I’m interested in. One of the few positive things I’ve taken away from being chronically ill is that I’ve learned to say no and stopped giving in to things I’m not comfortable with. People can choose to show off their scars and bags and anything else they want to, and that’s fine. It’s also fine for me not to do it. It doesn’t mean I’m uncomfortable with my body, or that I hate or resent it. It means that the things that make me feel empowered may not be the same things that make you feel empowered.

Find what makes you feel brave and confident. It might be something that makes your invisible illness more visible to others. It might be something that only you can see. It can, and probably will, change over time. I feel empowered by writing and talking and sharing my experiences. That’s why I started this blog. That’s also why I’m sharing my feelings on this topic. I know I’m not the only one who feels this way, and I want you to know that however you choose to feel empowered is okay, even if it’s not what other people are doing.

I’m not ashamed of my body, or the way I choose to present it (or not present it.) I am still brave, confident, and all of those other words that come along with owning your battle. I just choose to keep some things inside.

“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.