Why I Don't Say I 'Suffer' From My Chronic Conditions
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 I do. Until recently, I never examined why, but when I think about the language 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.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
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.
I think 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 I suffer from hEDS, but from now on I might just correct you. Not to make you feel uncomfortable, but to help you 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. I live with them, and I like my life. It may seem like a small distinction, but to me, it is one that matters.
A version of this post originally appeared on zebrawrites.com.
Thinkstock photo by Tishchenko
Sara is a blogger, bibliophile and professional patient/napper seeking to find happiness with chronic pain/illness. She strongly believes in the power of positivity, but is trying to learn to balance this with sharing the truth. Her primary diagnosis is Ehlers-Danlos syndrome, but she also lives with many coexisting conditions, including Common Variable Immunodeficiency, Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and intractable migraine. She blogs at ZebraWrites.
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