I'm very lucky - I'm with a partner who (mostly) gets it. It's not easy to "get it" when you see a person on a daily basis who looks perfectly fine but can't do all the things a perfectly fine person can. And gets cranky about it. I try to remember that I'm lucky - that it takes work to "get it". And that he really does work at it. Unlike so many...
I've mentioned the message boards that those of us with rare syndromes go to to share information about what we've found out, ask questions about what might be going on with our symptoms, and vent about problems with doctors/family members/employers who don't understand and don't want to try to "get it". I saw a new post today about yet another woman, married for over 30 years, whose husband is divorcing her because he can't handle the EDS. Her daughter is about to get married and she has 2 surgeries scheduled, but he has had enough and wants to marry her friend. This sounds awful. It IS awful. (And don't even get me started on the "friend"!!!) But I try to remind myself that it takes a very tough person to be by someone who is in pain a lot of the time that they have no power to make better. Another poster said she had to move back in with her mother when her last employer set her up to get fired because he was tired of dealing with her disability. Her mother has her own emotional problems and accuses her daughter of malingering and of not actually being in any pain.
It is natural, when you love someone, that you want to "fix" situations that cause them distress. And it's frustrating to find yourself doing stuff around the house that has to be done that your partner could do before, but now she's sitting on the couch with her feet up (our blood drains to our feet and tends to stay there, causing pain and low blood pressure - most of us are most comfortable with our feet raised, but it makes us look lazy as all hell!) And it's terrifying as a parent to believe that your child is in actual physical trouble, plus there's the guilt that comes with passing on a genetic condition. It's all so fraught!
I'm lucky. My mom gets it. She buys me braces for my feet, pays for my Pilates therapy, and understands that the smaller pains she has - from a condition she never even knew she had - are magnified in me. And I don't think she blames herself too much - she knows it was out of her control.
My wonderful boyfriend is really "getting it" now. He did not sign up for this - it took us both by surprise - and there have been times when he didn't get it and would ask me some stupid (well, to me it felt stupid) thing about "why can't you...?" and I would cry and yell "Because I have f*cking, EDS, goddammit!!!!" (I am not always attractive and lovely ;)) But now he gets it - I think as much as someone who doesn't have "it" can. I'm slower. I lose my balance. I can't walk as far or stand in a line. I sit up in bed lots of nights with muscle spasms (and - god help him - I SNORE! Even when I'm SITTING UP!) I can't jump right up when he calls me because a) my feet may be out of joint and I have to check and b) my bp might be very low and I could keel over. I have that southern belle attitude where I try for too long not to be a bother, and that means when I finally admit that I have to sit down, it means I actually have to SIT THE HELL DOWN RIGHT NOW! But we're both learning. And last week, he bought this:
I've mentioned the message boards that those of us with rare syndromes go to to share information about what we've found out, ask questions about what might be going on with our symptoms, and vent about problems with doctors/family members/employers who don't understand and don't want to try to "get it". I saw a new post today about yet another woman, married for over 30 years, whose husband is divorcing her because he can't handle the EDS. Her daughter is about to get married and she has 2 surgeries scheduled, but he has had enough and wants to marry her friend. This sounds awful. It IS awful. (And don't even get me started on the "friend"!!!) But I try to remind myself that it takes a very tough person to be by someone who is in pain a lot of the time that they have no power to make better. Another poster said she had to move back in with her mother when her last employer set her up to get fired because he was tired of dealing with her disability. Her mother has her own emotional problems and accuses her daughter of malingering and of not actually being in any pain.
It is natural, when you love someone, that you want to "fix" situations that cause them distress. And it's frustrating to find yourself doing stuff around the house that has to be done that your partner could do before, but now she's sitting on the couch with her feet up (our blood drains to our feet and tends to stay there, causing pain and low blood pressure - most of us are most comfortable with our feet raised, but it makes us look lazy as all hell!) And it's terrifying as a parent to believe that your child is in actual physical trouble, plus there's the guilt that comes with passing on a genetic condition. It's all so fraught!
I'm lucky. My mom gets it. She buys me braces for my feet, pays for my Pilates therapy, and understands that the smaller pains she has - from a condition she never even knew she had - are magnified in me. And I don't think she blames herself too much - she knows it was out of her control.
My wonderful boyfriend is really "getting it" now. He did not sign up for this - it took us both by surprise - and there have been times when he didn't get it and would ask me some stupid (well, to me it felt stupid) thing about "why can't you...?" and I would cry and yell "Because I have f*cking, EDS, goddammit!!!!" (I am not always attractive and lovely ;)) But now he gets it - I think as much as someone who doesn't have "it" can. I'm slower. I lose my balance. I can't walk as far or stand in a line. I sit up in bed lots of nights with muscle spasms (and - god help him - I SNORE! Even when I'm SITTING UP!) I can't jump right up when he calls me because a) my feet may be out of joint and I have to check and b) my bp might be very low and I could keel over. I have that southern belle attitude where I try for too long not to be a bother, and that means when I finally admit that I have to sit down, it means I actually have to SIT THE HELL DOWN RIGHT NOW! But we're both learning. And last week, he bought this:
That is Rick beside a tandem bike. He has his own bike, which he loves, but we started renting the occasional tandem a couple of years ago. It could be expensive, especially because if it turned out I wasn't quite up to it, we had wasted an expensive rental. But I loved being out in the sun and air. So he did the research and bought us our own (notice the extra padding on my seat). He has to do almost all the work - my legs can't handle a whole lot. And when it's hot, I need to stop for water and salt and to put my feet up on a bench for a bit, cos I can get really light-headed and nauseated. But he doesn't seem to mind. And it's given me a sense of freedom that is indescribable!
It's not easy being with me day-to-day. I hurt and I'm tired and I'm cranky and I can't do all the stuff everyone else wants to do. And there are a lot of people on the planet who just cannot deal with that. And I appreciate how lucky I am to have this wonderful guy in my life (especially when I make short-tempered, smart-assie faces at him)! Thanks, Honey - I love you! (And I'm so glad you might have finally found earplugs that will block out my snoring. Egad...)
It's not easy being with me day-to-day. I hurt and I'm tired and I'm cranky and I can't do all the stuff everyone else wants to do. And there are a lot of people on the planet who just cannot deal with that. And I appreciate how lucky I am to have this wonderful guy in my life (especially when I make short-tempered, smart-assie faces at him)! Thanks, Honey - I love you! (And I'm so glad you might have finally found earplugs that will block out my snoring. Egad...)
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