There are some things that stay with you, even though you should let them go. I know I shouldn’t let negative encounters rent space in my precious little head, but sometimes you just can’t evict them. For some reason they just stick with you. Two incidents with people that I considered friends still get to me today.
The first was with an ex-boyfriend whom I had remained friends with. He mentioned to me once that he thought I was a hypochondriac, even when we were together. I’ve never been a sickly person; I don’t get colds often, or the like. I also don’t complain often to people, I know they don’t understand, and I know they don’t want to hear it. He and I were together before I was diagnosed with HEDS, but long after I suffered from chronic pain. I’ve never been able to sleep on my right side, as it is very painful. I also have considerable amount of trouble getting to sleep because of pain, and often toss and turn. And that is what he was referring to. I was gob smacked when he said it; I was hurt, angry, and confused. Our friendship was lost that day, he refused to listen. He was right in his mind, I was a hypochondriac, and what was I to say? I didn’t have a diagnosis, I only had chronic pain. He couldn’t see the pain, he couldn’t feel it, and I didn’t have a reason for it.
So then I wondered is this how others see me? If I complain about the pain will others feel the same way? I already go out of my way to not complain, to not let on to the pain I feel every day. And at that moment I ceased all together. I’d already had doctors insinuate that it was in my head, and now my friends as well. So for several years I never made a peep, I didn’t tell anyone, I didn’t tell doctors, family, or friends. I suffered in silence with my pain.
Several years later, and after I had been diagnosed with HEDS another devastating encounter with a friend occurred. A large group of us had gotten together for a bbq, and good times with friends. The girls were all talking about training, and running charity races. I made the mistake of joking that I wish I could, but at this point if you see me running there’s a bear chasing me. One of my friends started lecturing me that I just needed to do it, and to stop making excuses, if I started working out I’d feel better. I tried to explain to her why I couldn’t and she let into me that I was just making excuses. It got heated quickly; I left the BBQ in tears. Our friendship has never been the same, and we’ve become more of acquaintances at this point.
It was at that point that I decided to never mention my EDS again, and I didn’t for at least 2 years, closer to 3 years. I never mentioned my illness, I didn’t speak of it, and I didn’t tell anyone. When I had a severe dislocation I drove myself to the emergency room. When things hurt, I sucked it up, and moved on. If I couldn’t deal then I just shut myself off until I could. I just ignored the EDS, coped with the pain, and suffered in silence.
In hindsight, my reactions to these events could have been more constructive. But, EHS is a lonely disease. People don’t understand it, they can’t see it, and no one has heard of it. You can’t see Ehlers Danlos, you don’t look sick. Any disease that causes chronic pain is a lonely disease. Unless you’ve lived with it, you can never understand just what it is like. I’ve learned now that I can’t remain silent, not because I need to complain, but because I need to spread awareness. I need to be a voice, and I can do so as long as I surround myself with supportive friends. It may have taken a few disasters for me to learn how to be a voice, and how to accept that not everyone will understand….and that’s ok.