A Wasted Physio Appointment

I have taken to Blogger tonight because it's the only place I can turn to when I want to completely express myself, and my annoyance. I'm sitting in my bedroom as I write this. I feel discouraged once again after todays appointment. It was physio this time, & just as useless as expected. The physician's manner was offhand & rude. I didn't want to go there but my Rheumatologist insisted on it, I think she just wanted to pass the book because I am a Marfan/Hypermobility patient, something that she knows little about, neither did the physio though. She asked me why I was there & offered me almost nothing, which I had already anticipated. What I didn't expect though was her rudeness & lack of understanding. She told me to "Park up my health problems, & leave them there"! Apparently that's called managing, wow, why didn't I think of that simple theory?! I felt upset at the time so I didn't respond to her small minded comment, but now I'm at home I'm angry and want to go back & ask her how she would go about parking up Marfan Syndrome & it's related symptoms and leaving them there! If she thinks it's so simple I'd love to get some tips off her. If only I had been brave enough to ask her that before I left!

I only wanted a bit of professional advice from her but once again it looks like I'm left to be my own expert, something that you have to get used to when you have a rare syndrome that certain doctors know little about. The good side of that though is I've had to educate myself as much as I can & do as much research as possible, which isn't a bad thing because the more I learn about Marfan Syndrome, Hypermobility, and related symptoms, the more I can help myself & maybe even others. Whenever I have some spare time now I always go on the computer and pick up as much relevant information as I can manage. I would advise anyone in similar situations to do the same, so that next time you see your doctors, you go along armed with the appropriate facts.

While I'm on this subject I just want to highlight the importance of online support groups. My online Hypermobility/Marfan friends are the real experts, because like me, they deal with these problems on a daily basis. Without them I'd have nowhere to turn when I feel unsupported by certain medical professionals. They can often inform me better than some doctors because they can 100% relate to my symptoms, being part of support groups full of people who suffer in the same way as me is helpful because it lets me know I'm not totally alone with my troubles.

I'm nearly at the end of this blog now but I'm pleased that I've been able to use my experience with the physio to bring attention to my rare health problems. It's not a sympathy thing, I don't talk about this stuff because I want people to say "poor Lucy, she's got this & that wrong with her" I do it because there's not nearly enough awareness for Hypermobility, Marfan Syndrome, or other rare illnesses. Even the doctors don't have enough knowledge, so if I can bring focus to it by speaking about it in my blogs, then maybe it will make a few people want to learn more about it, which will then hopefully raise more awareness..   X