Although I live with nearly 20 forms of chronic illness, most of which are related to my Hypermobile Ehlers-Danlos Syndrome (hEDS), I have never felt comfortable when someone says that I “suffer” from any one of them, and I have never used that language myself. I cringe inside when someone says that I do. Until recently, I never examined why, but when I think about the language that I do use: that I “live with” or “have” asthma, or anxiety, or chronic migraine – I think at some point I must have made a choice. A choice that despite the fact that I live with these conditions, I will not suffer from them. It’s a choice that you can make too.
This post is not intended to shame people who do feel that they suffer (or choose to use that language) – that is a valid feeling. It’s just not one that I happen to have, and I’m guessing I’m not the only one. It has been said that to suffer is to be human, but I think it is also human to go on living anyway. To climb the mountains instead of carrying them, if you will. It’s human to accept the challenges in your life, to sit with them, and move forward the best way that you can. To accept that pain and happiness are not mutually exclusive. It’s a hard concept for people who have only experienced acute pain to understand, that a person can be in pain, and still be happy, but take my word for it, they can.
When you use the word suffer, people seem to feel the need to apologize for your illness, which is ridiculous because (1) they didn’t cause it, and (2) it’s not something that anyone should apologize for, it’s a fact of life. While I appreciate that these people are usually trying to empathize with me, I usually end up feeling like I’m being pitied, which isn’t something anyone wants to feel. I’m not going to get mad at you if you say that I suffer from hEDS, but from now on I might just correct you. Not to make you feel uncomfortable, but to help you to understand me better. Because I believe that trying to understand another person is a worthwhile thing to do.
So yes, I have Dysautonomia, and chronic fatigue, and widespread, ubiquitous chronic pain, and a number of other things – but I do not suffer from them, thank you very much. I live with them, and I like my life. It may seem like a small distinction, but to me, it is one that matters.