I’m really excited today to feature a guest post by Brittany, an incredible young woman (and fellow Canadian!) who has Ehlers-Danlos Syndrome, in honor of National Pain Awareness Week. I was first connected with her through the amazing Sandy Smeenk of the ILC Foundation and have been lucky to have her in my life ever since. She does a lot for other people living with chronic pain and has been a deeply cherished source of support for me.
My name is Brittany Crichton and I am 24 years old, living with Ehlers-Danlos Syndrome and the many other complications and side diseases that come along with it.
It’s hard to say how my pain started because I always remember it being there. I remember people always giving reasons for it like maybe it was from gymnastics, it’s just growing pains, etc. As I talk about the topic of pain with my friends I realize that I can’t remember a day that I’ve woken up and not been in pain, or had my pain level lower then an 8 out of 10. I can’t remember what my life use to be like, and it is sad that this has become the norm for me.
From the age of 18 my symptoms got progressively worse, and at the time we had no idea I had EDS. I went from hospital to hospital, doctor to doctor and had thousands of tests done only to be told they had no idea what was wrong. It was so hard trying to explain to doctors what I was feeling, and for them to brush me off or just send me to another doctor because they did not want to deal with it. Finally, at the age of 22 my family and I made our way down to the Mayo Clinic in Rochester Minnesota and was finally diagnosed with Ehlers Danlos Syndrome.
It is hard for people to manage my pain because I do not absorb pills like a normal person, so it takes a higher dose to make a dent and nothing makes an impact or is able to take the pain down. It was very hard work but I have finally learned to cope with my pain being at an 8 everyday thanks to physio and my naturalpath. When my pain does escalate that is when I have to go to the hospital to help get it under control.
My life has dramatically changed since I started getting more symptoms and the diagnosis of EDS. The life that I wanted isn’t the life that I can have. I wanted and had my dream career only to have it taken away. I cannot go out and go to a party with my friends without suffering major consequences for it. There are times when I think is this really my life, why am I still here living in a life like this? But then I stop and think, I am glad it is me and not anyone else in my family, or my friends because I know I can handle it.
At first I was seeing all of the negatives that came from this disease, but then I had to look at it from a different angle; look at the amazing people I’ve met from having this disease, people who have the same disease and can relate. I am making a difference in the next generation of children living with chronic pain and rare diseases, and if I didn’t have Ehlers who knows who would be doing those things for these kids. EDS has changed my life but it’s not all bad. That is why I started my own website to show that; yes, even though I’m living with this painful disease, there are good things that can come from all of the bad if you look at it from a different angle.
Peer support is very important and I am getting in contact with people all over the world and it’s amazing. I am so thankful for that, and thankful because I would have never have been in contact with Katie Robertson otherwise.
So remember on those painful days reach out to others who feel the same way and who are going through the same, because we are all here for each other.