Sunday, October 10, 2010

When family can start seeing a chronic condition for what it is, and the person beneath it all

This weekend was Thanksgiving way up here in Canada,eh!
I spent it at my awesome grandma's house with some of my immediate and extended family. I had a good time, but am glad to have things back to normal.

Usually spending time with family has meant overwhelming stress and anxiety. The idea of having everyone take notice and let me know how much worse they think I've gotten is always a blast. The looks of pity when I walk, lay on the floor, have a new brace, or pretty much anything else, isn't fun knowing they're directed at me. I hate having to answer "yeah, I can't do that anymore" to a lot of questions about what would have been a normal part of life, six months ago. I'm glad the visits to the ER didn't come up, and I was able to pretty much avoid the gj-tube conversation. That would have been the last thing I needed...I can just picture the conversation now "I'm getting a feeding tube put in my stomach because eating is a pretty big problem now". This time though, something felt different. Very different, and I liked it.

There was no pity, staring, questioning and insistence that I needed help when I didn't. After the last year of trying to get my family to understand EDS in all of it's glory, but with a positive outlook, I think they are starting to see it like it is. Or, at least like it is for me. It has taken a lot of e-mails filled with information, resources and many phone calls. My family is pretty tight-knit and we keep in touch pretty well. I've always been open and honest about the whole EDS thing, more than willing to answer any questions, and there have been a lot. I guess it's not everyday your niece or daughter ends up having some crazy-rare-genetic-condition. One of the hardest things for me to deal with was the constant comparisons between my twin sister and I. Nobody really understood why our bodies were so different (mine falling apart more than hers) yet genetically we are the same. I know there's been speculation about why it's just me "suffering" and that I might be looking for attention and whatever else. Yeah, furthest thing from the truth. My sister and I live life very differently, and it also means we deal with life differently. Yes, she also has EDS, and yes, she has a lot of the same symptoms and pain issues. No, she's not as open about it as I am, and our symptoms are different as well. This comes from lifestyle differences, and the fact that we've had our own lives for the last 9 years. Oh yeah, minor detail; there are very small genetic variances even with identical twins which mean huge differences to the outside world. A good example of this, would be with a set of identical twins who have different sexual orientations. The nature vs. nurture argument can easily be blown out of the water, the same goes with the EDS thing. Just because we're identical, it doesn't mean that EDS is going to present exactly the same with us. When I was at the conference I met a few people who are twins, and they've experienced the same thing in regards to differences in symptoms. That was so nice to know...I wasn't crazy it was happening to other people who had another half as well. I've always been sure to let everyone know that I don't do pity, I'm independent and it will not change. They are starting to understand that there's not really anything they can do to make symptoms better and that it's a completely different way of life. They know that I'll ask for help when I need it, and that making a big deal out of an ER visit isn't constructive for anyone. What I think it's coming down to is, something along the lines of acceptance, that although my body is broken and falling apart, I am not.

I feel like they are starting to see me for me again, and not the EDS as much. I hope they see the girl who instead of falling apart and giving up, is the girl who despite all the crap, is always finding a way to make something work. We'll take today for example, I was peeling potatoes. My hands are very bendy, which makes everything difficult. I used a peeler that was great for my grip it was nice and wide, but the handle included a little lemon zester. That meant the handle was a bit "sharp" if you have EDS. I quickly found a way to remedy that problem. Next came the task of getting out all the little nobs and little bits. Any normal person would use a paring knife. The idea of holding a wet, slippery potato in one hand and a knife in the other didn't sit too well with me. I had visions of cutting myself a million times to complete a simple task. I ended up using a little melon-baller and it worked perfectly. Both times I had someone say that they could do it, and not to worry about it. I'm glad it gave them opportunities to see how instead of giving up, or not even trying anything won't yield any success. But trying something new, might just work.

My parents are also learning that freaking out about this whole EDS thing, is a complete waste of energy and doesn't get anybody anywhere. They know that there are things I leave out, and that I down-play a lot, but if I'm not loosing it, then they shouldn't either. Hopefully, they see all of this regression is also producing a lot of other opportunities, and that life is super-unpredictable. So we need to ride out the crappy bits, and enjoy the finer things whenever possible. We've had the "I might need to move home if I get worse" conversation, but we've also had the "I'm not tied down to anything anymore, so I'm going to do what I want until I can't" conversation. I know they're crapping themselves over my plan "C", but they know that I'm happy with my plan and can't wait to make it happen. Between both discussions I think we've come to an agreement that with me, living life predictably is over-rated and making long-term plans is a waste of time. So, we deal with life as it comes, and live from one moment to the next. I wouldn't have it any other way.

P.S. My awesome friend Julie (my bendy friend's wife) made this video. Her timing couldn't have been more perfect. You may want to pass it on to your family and friends.

"Life just is. You have to flow with it. Give yourself to the moment, let it happen."


  1. Happy Thanksgiving--I'm glad you had a good time. I'm so envious of your family understanding EDS, understanding you through it. My family doesn't get it yet. They obviously know I have bad joints, but I think that's still what they think of it as. They have no idea how much it actually affects our lives. I can't wait to get to the other side, where they get me again--beyond the crutch and braces and surgeries--but that means they'd actually have to acknowledge that these things are happening and are connected. Interesting about your twin, too. I love your blog.

  2. I know I've mentioned it somewhere before... The 5 stages of grief in regards to the "loss of health" when you're diagnosed with something.

    Most of my family is still stuck in the denial stage about my EDS. They just don't think that it can be as bad as I say it is.

    I can go days without complaining, then there are days when, every five minutes something new pops out, or randomly starts hurting, and I get frustrated and complain a lot. They think that on the days I don't complain, I don't have problems... I do, I'm just not complaining about them, because they're ALL THE TIME problems.

    I'm glad to hear your family can see you for you again. It gives me hope for my family.

  3. Happy Thanksgiving - The linked video was superb. The love shining through. An honest truly heartwarming account of someone who has a proper understanding of loving someone with EDS.

    It seems that in so many blogs so much of what you mention with regard to family reaction to the condition is a common denominator. I mentioned somewhere in a comment lately to a lovely young woman with POTS that it seems it does matter what initials one's condition represents. MS for example seems to bring widespread acceptance and understanding, perhaps because it is not a rare condition. EDS mixed reactions indeed or normally for me at least a rapid explanation followed by people not quite knowing what to say.

    It seems that in the UK motility issues are just not taken so seriously (ie: GI Tube) even getting a gp to listen with regard to this aspect of the condition is hard let alone find a Consultant who has sufficient knowledge to take a referral.

    You are so right in your description of each persons EDS being unique and that despite you being a twin this does not mean that your EDS affects either of you the same. I am not a twin but a long time ago now taught identical twins, two different sets who struggled, without having rare genetic disorders to be seen as unique individuals. Throw EDS into the pot & I hear your frustration loud & clear.

    I think some in my family do 'get' the EDS but just don't know how to process the enormity of it. Others have their heads firmly in the sand.

    I love the honesty of your blog. Also find the layout invigorating yet relaxing at the same time - if that is possible, it must be as I find it so. The colours please me. Its harmonious I guess.

    I looked properly at your profile picture today and its clever really clever. The sitting amongst the standing... We all have in common the way we sit amongst many other things. Our personalities all different. Our condition affecting us uniquely. Our experiences it seems so often so similar.

    I so get the statement 'ALL THE TIME.. problems

    Take care and a gentle virtual hug from the UK.