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I know I said I was going to write the second part of my loss post, but can I just take a moment to share some thoughts first? It’s what has been on my mind this weekend. I will finish that post, I promise, but that’s a topic that takes some time and thought, and right this moment, I just want to get this out.

I’m reeling a bit.

See, I went to physiotherapy this week. Now physio in and of itself shouldn’t be anything remarkable, but I have to admit, this week put me into a bit of a tailspin, and the timing couldn’t be much worse. It’s like some Mafia boss looked at my confidence, and then ordered someone to take it out at the knees with a bat.

The irony is I actually like my physiotherapist. Someday I’ll have to write about the physiotherapist I was working with just before him. Suffice it to say he was a total jerk. I should have read the writing on the wall when he made me cry at least twice on my very first visit. It started when I was nervous about everything and in my press to make sure he understood how it was important he just said “sheesh, you talk too much!” Yeah. I should have known then it wasn’t going to be good.

But my current physio has a bit more of a clue. He hasn’t discounted my feelings about EDS, and he seems to have some confidence in my own understanding of how things work in my body. He doesn’t talk down to me or treat me like I’m stupid. I asked to be reviewed by someone else when I realized my old therapist was about to close my case, not having helped (I actually feel he did damage to my joints) and the new senior physio was the result.

This week was my second visit with him and our first visit following the assessment session. It was okay on the surface, but he started talking about how it was just as important for me to get into physical shape such as doing aerobic exercise as it was to build core strength and wanted me to come back next time with ways that I can do an exercise routine–things I would enjoy doing enough to stick with them.

He asked me how I felt about that, and to my credit, I did acknowledge some of my hesitance. I spoke of how it’s hard for me to believe I can when exerting myself can leave me in pain for days, but I just didn’t feel like I helped him get it. I stumbled through the exercises for the week, and left.

But . . .

By the time I got home, I was shaken. Don’t you hate how you the right words AFTER you leave somewhere? I was stammering with doubts and hurt, and it came to a crux when my husband asked how the session went and I burst into tears. (I promise, I don’t cry all the time.)

“How the hell am I supposed to do some kind of aerobic exercise when I can’t even walk up the stairs?!!”

Why didn’t I say that at my session? And that’s when it hit me. He doesn’t think it’s as bad as I think it is. Nobody seems to take me seriously. I know I’m not in a wheelchair or on crutches. There’s this scale though. I learned it while providing treatment for drug and alcohol addiction. I’d have clients scale how much they want something to change on a scale of 1-10, but then I’d also ask how confident they are that things can change on the same scale. I’d say my confidence was about a 1.5 that day.

And then, there it was, rearing its stupid, ugly head again. My doubt. Not just about my ability to make change, but that abhorrent voice that quietly whispers into my ear “what if you are the one taking this out of proportion? What if things don’t always present clinically because you really are making it all up. You just want a diagnosis as an excuse. Maybe everyone just thinks you’re lazy. Maybe you are lazy.”

I wish I could write some gem of knowledge that takes away all the doubt, but I think it’s just one of the passengers that ride on my bus. I don’t see him leaving anytime soon. No amount of logic reminds myself that lazy people don’t complete masters degrees, work in several positions while raising a family and spending volunteer time in my community. The fear still niggles in the back of my head sometimes. In some ways becoming a part of the EDS community hasn’t helped either. Some days it feels like a light coming on to talk to other EDSers. Finally all the bizarre quirks in my body and the pain that is there every day makes sense! But likewise I hear the people in the forums who have joints dislocating every time they shift their weight, who have no choice but to use wheelchairs or who need feeding tubes, and I question if I sound like a fraud next to these poor, amazing women I’ve come to admire.

I know that their struggle isn’t my benchmark though. Just because I can still walk, doesn’t mean that I’m not worthy of support and acceptance, even if it means that I will have to fight harder sometimes to be believed (sadly, even with severe symptoms, most of these men and women haven’t been believed either).

So I’m worried. I feel like I don’t look like I’m having problems. I can’t comprehend, though, how they can decide that some things, like my back aren’t bad when not a single person has even tried to take any diagnostic tests. Do they magically have x-rays and MRI’s in their heads? Even if they give me MRI’s, I know many of the concerns I have often don’t show up on imaging tests. It would be nice to know though. Part of me wants to find a back riddled with concerns. Please read that carefully. I don’t want the concerns. I just want what is there to be visible. It would be so refreshing to be able to point at it and have clear evidence that doctors don’t refute. It won’t happen though. I know that.

My appointment that I’ve been waiting for with the rheumatologist is Tuesday. This is my chance to finally be heard. So much is going into this one appointment, and at the same time, I know how often doctors don’t really get what life with EDS is all about. If I can’t show my physiotherapist that more is happening here, will I convince the rheumatologist who will hold so much of my hope in her hands? How do I even begin?

Or worse,

What if I stammer because there’s so much to say like I did in that first physiotherapy session and she also says “sheesh, you talk too much!” and she rolls her eyes at what I have to say.


I know I can’t be alone in these feelings. Have you been there. Any words of wisdom or understanding? Share them below in the comments.

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