To the People in My Life: Please Accept That I Am Doing My Best to Care for Myself

I have Ehlers-Danlos syndrome and at the moment have no treatment helping it. Over the past month or so it has been harder to deal with the physical pain and the emotions that go with it. For the most part I have learned to listen to my body and not push past my limitations. I’ve learned to pace myself to get things done. I have also learned to be still and rest when needed. All of this helps me to manage my illness better.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Sometimes it takes everything I have to manage my illness, take care of myself and keep my emotions and attitude fairly stable. During times like this I do whatever it takes to take care of myself physically and emotionally. And trust me when I say that by now I know better than most people what I need to do to take care of myself even if it doesn’t always make sense to others.

People have mentioned that I shouldn’t isolate, or even jokingly say I must be avoiding them or don’t want to hang out with them if I can’t visit or have to leave early, or put pressure on me to attend events or repeatedly tell me I should have attended an event.

I think it’s great that people want to spend time with me. I wish they knew how much I want to spend time with them or attend events. I wish I didn’t have to leave early or cancel at the last minute. I wish I didn’t have to miss out on so much. I wish even if people can’t understand how I feel, despite repeatedly trying to explain it, that they would at least accept I am doing my best to take care of myself even if it means I am missing out on spending time with people I care about or doing things I’d love to be able to do.

I also wish they knew how frustrating and depressing it is to constantly hear those comments. I have a hard enough time accepting my limitations and trying not to feel guilty when I’m doing all I can manage. Lately I am struggling a lot with the “I’m not good enough” or “I can’t do enough” or “I’m letting everyone down” feelings. So commenting on what I’m not doing enough of definitely does not help and it puts pressure on me to push through and do more than I should even when I know it is too much for me.

Even on good days everything takes a toll on my body and my mental health. During flares I have to seriously weigh out what I can and can’t do even if it means missing out on a lot. I have to look at my energy level, pain level, how loose my joints are, how long I can stand, how long I can sit, how much pain it might cause, how much fatigue it might cause, my mood level, whether being around people is likely to help me or irritate me… this list could go on and on. I never know for sure what toll it will take or how bad, or how minimal, it will be, but I’ve lived with this long enough to usually have a pretty good idea.

I want to say to the people in my life, please accept that I am doing whatever is necessary to take care of myself, even if you don’t completely understand it. Although I do believe you have the best intentions of helping me, please believe that I am doing all I can right now. Please realize if it looks to you like I am slacking off or not doing all I should be doing, in my mind I am seeing and feeling that ten-fold. It is magnified in my own mind how much more I should be doing, and I have to constantly counteract those thoughts with the reminder that the best thing I can do is take care of myself so I can do more later on.