Do I need a diagnosis?
Let me start off by saying that not having a diagnosis yet does not make your symptoms or experiences less valid. I spent years and way too much money to figure out what is “officially” wrong with me. Having said that, receiving a diagnosis gives you insight into what treatments could work best for you and what lifestyle changes you should be making, plus it can help determine the what kinds of medication will or won’t work for your body.
When I (finally) got my official hypermobile Ehlers Danlos Syndrome diagnosis, the biggest thing that I changed was my stretching and exercise routine. I was spending at least an hour a day on stretching and rolling out my body. I had always been taught and thought that I was helping manage my pain by doing this. Growing up in dance has given me a finely tuned inner ear for the messages my body is trying to send me, however, growing up in dance also meant that I never even considered the possibility that stretching could be harming me in any way. Come to find out - for people with my condition it is not recommended to stretch the way dancers do.
Ehlers Danlos Support UK says, “Doing gentle stretches (or ‘mindful movement’ – a form of gentle controlled movements) can also help address the stiffness that can develop. Yoga can be useful too, but find a good teacher and please take care not to overstretch into hyperextended positions.” -Jason Parry
Soo…. contorting myself into dance and yoga poses every day religiously for years and years of my life could have….worsened….my problems?
Good. Very good.
Having that knowledge 10 years ago would have been really nice, but instead I’ve spent all of that time trying to properly figure out what is causing all of my problems instead of having the opportunity to treat them.
And, as I’ve spoken about so many times, my life changed DRASTICALLY during those years of searching for answers. So many people have come in and out of my life. The cast of characters is completely different after ten seasons of being on air.
My period of having no diagnosis (before my back to back periods of being misdiagnosed lol) was the worst time of my life. Bar none.
College was hell for me. You could not pay me any amount of money to relive those years.
I lost people I thought would be lifelong friends and family because of the double whammy of me becoming suddenly unreliable, and them not really believing what I was going through because I had no real medical answers to back it up yet.
So, to all the loved ones of people currently struggling with their health and seeking diagnoses: please be patient with us. No one wants to be the burden, or the reason plans fall through, or the person everybody has to worry about. Trust me. So, if you get frustrated please know that you’re getting frustrated at the PROBLEM and the SICKNESS and not at US. We are just as frustrated (if not more) and it is a huge relief for us when loved ones acknowledge that they are on your side and there to support you against the common enemy.
Be kind. Lead with love.
XO,
MB