https://www.inspire.com/mebby13/journal/opening-up-1/
I've been quietly following this site for some time now, recently joined, and find inspiration through the stories shared here. As frustrated as I am with what EDSers go through every day and the lack of understanding there is from doctors and friends - see zebra89's post People Just Don't Understand (http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ people-just-dont-understand-1/?ref=as&asat=99829842), I also realized how incredibly encouraging this site is as a resource of resilience.
What I love about this site is that it offers a community of support and understanding from people who are experiencing what I am going through. I don't have to use analogies to explain the high level of pain I'm in, or explain away the constant fatigue and my increased need for sleep. I'm not judged for taking naps or sitting out another round. I don't have to tell people, "you can't understand if you haven't experienced it;" there's sincere empathy and compassion in the comments. I don't have to constantly hear things that are so insensitive and unhelpful that I've stopped answering questions, stopped sharing how I'm feeling, stopped opening up.
I have always felt incredibly guilty or rude when people ask me how I'm doing, and I reply simply by saying I'm in pain, tired, or that it's a bad day for me. I answer without much explanation or elaboration to avoid complaining because it's hard for me to talk about how I am, what it's like for me in general. So I don't often share very much about how EDS affects my life. Essentially, there's this constant pain that no one around me feels. I feel it. And it's everywhere. I can't give it to someone else and force them to understand, "here, try smiling through this every day. try getting through the day itself. that's how i'm feeling, that's what i'm dealing with."
Initially, being honest about my daily level of discomfort drew sympathy from family members or friends. As it becomes more mundane, and constant, to hear I'm in pain, or I'm tired, there's less sympathy and more annoyance. Along with annoyance, comes the suspicion that I'm making it up - it's all in my head (doctors have actually said this to me). And while, I know it's not awesome to hear the same thing all the time with little variation, others have to understand that's the reality of my life with EDS; that's how I'm going to feel. Every day I am in pain, I get tired easily, and can't do everything I might want to and all of that is part of living with this.
I've become "no fun to be around;" I'm the spoil-sport, the stick-in-the-mud who "won't do anything." Friends and family are frustrated with my inability to participate in activities they want me to do. And their frustration is only the tip of the iceberg of frustration I feel. I'm just as frustrated, if not more that I can't do what I used to. And sometimes I actually do participate, and suffer from overdoing it.
I workout when I can, especially when I'm around friends who go to the gym frequently, but when I do, I don't take it easy. I'm not gentle with myself and not entirely mindful of my body, so I constantly push past pain. Sometimes my problem is that I overdo it and can't move for a couple days afterwards. Other times, I fight myself, blurring the distinction between good pain and bad pain resulting in an injury.
I used to run track, and running is something I still love to do. But I can no longer run that 7:08 mile. I can no longer move like I used to. I can barely climb a flight of stairs some days without injuring myself. My hips are especially bad - I can pop them just by sitting down, going up stairs, stepping off the curb. I'd love to be as active as I was then and able to do the things I want to without the consequences of severe pain. But I can't do everything I used to, and I'm still struggling to adapt to that. In my head, I can still make my time and run the distance, in reality, I'm lucky if I'm able to run without pain. So if I can't even accept the consequences of this condition and carefully cope accordingly, how can I expect others to begin to understand?
My mom has been my strongest supporter and biggest advocate throughout everything. From sitting with me through doctors appointments that only frustrated us more, to holding my hand through the worst of it in the ER. She was there when I was diagnosed. She's watched me struggle with simple things like sidestepping or walking a straight line in physical therapy. She's witnessed my weaknesses and knows I'm not just making up symptoms.
Having her be a part of all of this doesn't mean she completely gets it, though. She still says things that aren't helpful, but she tries to understand, and that means a lot to me. She's the one who showed me this site, and it's helped her better understand what I'm going through by reading posts from all of you.
Sharing what it's like to be in chronic pain, to be tired all the time, to suffer from frequent frustrations helps our supporters (family, friends, significant others, caregivers). It actually helps them support us better: by understanding a little bit more of what we go through, what we need from them, what they could do for us, by communicating what isn't helpful.
But it's tough. It's difficult to talk about it with people who matter to you. It's hard to tell them you're in a bad place and need help getting through the day or that although you appreciate their intentions, their comment was insensitive and pretty crappy. It's hard to be open with them and risk their initial reactions, but in order to be better understood, supported, and cared for, we need to speak up. They can't be better advocates if we aren't advocates for ourselves first.
Enduring EDS isn't a walk in the park and no one wants to come across as a burden or a complainer, but if I'm strong enough to deal daily with these struggles, my loved ones need to be strong enough to try to understand what that's like for me. Sharing won't always go over well, but we have to be open enough with each other to communicate how things could improve. If that means becoming more honest in my answers to questions like "how are you?" or passing along an article about chronic pain, or heck, even sharing this site with them, I need to give them the opportunity to understand my condition better instead of constantly closing myself off.
if I work on communicating, becoming more open about my condition, it won't change my struggles, but it will make coping with them constantly that little bit easier. It will improve my relationships and hopefully create more compassionate conversations. Those are things that will make the good days better and the difficult days a little bit more manageable.
