I’m going to talk about a repetitive experience I’ve been having. I think that anyone in the chronic illness community can relate to this. It’s frustrating and invalidating. Let me explain. When I’m having an issue, depending on the severity of the issue, I go to the doctor. The doctor decides how they want to proceed and orders testing. I go through extensive testing to get down to the root of the problem. Finally, one test comes back wildly off. Eureka, an answer. Finally, after all this pain and struggling. I have an answer.
This is where the problem starts. For many of us, getting this answer is something to rejoice in. It’s absolutely miserable that there’s another thing wrong but at last we know why. Then I start to relay this news to my family and friends. There’s a response that I get quite often. It goes like, “Wow, I wonder what my number would be.” or “You should tell X because they have that problem too.”
There’s multiple things wrong with this response. Let me start with the first one. I got this testing because I’ve been having a chronic problem that drastically affects my life. The majority of the population falls within a normal range. They are not having this issue. When you vocalize that you want to know your own result, it invalidates my experience. Now, it’s one thing if this individual has shared with you that they are also struggling. It’s different when they simply want to know out of pure curiosity. That number I got, that is ten times the range of normal, is not random. It’s weeks of agonizing issues that affect how I can function. I finally got an answer and it’s not by chance.
This response is not abnormal. Many people have said this to me. It’s painful to hear because it doesn’t take into account the destruction that occurred to get to this point. It’s like hearing “well that’s random, I wonder if mine is off too because that must happen to anyone.” I know that no one means harm but it’s something to keep in mind.
Let’s talk about the second response. In my family, sometimes I feel like the guinea pig. Often it will be insinuated that my problems spread far and wide through our blood lines. I think that holds a lot of truth. There are people in my family who have struggled with similar issues. Here is where the problem comes in, our experience is not the same. When someone tells me about another person’s issue in comparison to mine it’s not helpful. When the individual struggling shares their experience it can be cathartic. The third party shares it in hopes my testing and doctors appointments could fix my family. That is maddening. First, It’s not my job to fix other people. Often, especially in my family, they have the same access to healthcare and providers. Second, my experience is my own. I can only share my experience with others that I feel is appropriate. I don’t owe anyone my experience, not even in my family. This is my information and whether I share it or not is up to me. Testing can be embarrassing or extremely personal. It feels like I need to hold the key to everyone’s problem because I went through the testing to get it fixed. That’s not my responsibility.
I am cautious to post articles like this. It’s difficult for me to put these thoughts down on paper. That being said, this is a universal experience in the chronic illness community. This is universal for anyone. All the time we say things that invalidate each other. When we don’t speak up, we only harm ourselves by keeping it in. This has been my experience. I can’t share everyone’s story with these issues but I hope that you can understand my point of view. It’s not about being too sensitive or hearing people wrong. When I hear these things, it hurts my feelings. I’m sharing why because I know that others have felt this too.