This past weekend a couple of my close friends, who are also all bloggers, went on a scenic trip to the Stone Church in West Boylston, MA to get some new content for fall- and to also catch up because our busy lives make it impossible to see each other. A couple days before we were set to go… I almost cancelled. Since this hip injury, I have gained 5 pounds and wear this enormous hip brace. The HKAFO (Hip- Knee-Ankle-Foot Orthotic) attaches around my waist and makes me look even bigger. I didn’t want to go because of the braces. I had also just had a subluxation in my thumb and was in another brace. I did not feel confident getting photos done, but I went.
At first it was so awkward when I was getting photos done, because I felt awkward and honestly quite ugly compared to my stunning friends. As the photos continued, I started feeling more confident and realized that I cannot talk about “living a chronic illness life” or “a braced life” if I don’t embrace the very thing that gave me a platform in the first place! It is very rare that someone will meet me without at least 1 brace on, because the EDS has been so progressive. These braces are not used for “show” or because I am too scared to take them off. If I do not wear my knee brace, my patella will dislocate, and if I am wearing another brace that day, I am either recovering from a recent dislocation/subluxation or I am preventing one because that specific joint or joints feels loose. I thought I was so funny when I told my friends that I had to emBRACE my brace (I know it was a lame joke but it made me laugh) but it really is true!
When I talk to people or speak somewhere one of my greatest points that I hope people remember is that what was my greatest disappointment became my strongest form of empowerment.
“Then what was my biggest disappointment became my strongest form of empowerment.”
Braces are apart of our lives as EDS spoonies. There’s just no way around them, but they don’t have to discourage us. Yes, I am annoyed that I am typing without my right thumb because it is braced, and annoyed as all hell that I can’t walk on my own, but that is apart of my life.
Looking back on these past 8 years, I have the best conversation starter ever! Everyone always asks about my brace(s) and even though more often than not I internally groan and don’t want to share my story to someone I just passed by in a grocery store- but I have also made some very good friends because of these braces. It is also nice to not always be “invisible.” The RSD/CRPS is almost always invisible, which can create challenges that I plan on talking more about in our #iamnotinvisible movement starting with RSD/CRPS 4 a Cure on Instagram and Facebook on Friday 9/22!
Anyways the point of sharing the experience I had this is to encourage you to embrace your life despite what challenges you are going through. Living the chronic illness life is hard but we have to keep living and trying even when we can’t experience everything the same way as everyone else.
Here are some of the other amazing shots taken!