Hello all! I just wanted to update you on how my appointment in Seattle went last week. It’s been nearly a week since my appointment, but it was so overwhelming that it’s taken me that long to process what happened enough to write about it. There were a lot of new diagnoses and even more things than I expected wrong with my hands, elbows, and shoulders. It’s been really difficult for me to accept how much pain I’m in. I went through a period of mourning over the week as I accepted these problems, but I have finally come to peace with everything and I am feeling much better now.
Dr. Ericson was wonderful- and I am so blessed that he accepts my insurance and that my Dad was willing to drive me to see him. The appointment started an hour and a half later than scheduled- but it was totally worth it! Dr Ericson takes his time and spent well over an hour explaining things to me, so I didn’t feel like I had to “word vomit” on him just to try and get in everything I was thinking during a 15-minute appointment. His evaluation was very thorough. He swung my arms around, popped my wrist and thumb in and out of place, and examined my hands and elbows. I got diagnosed with half a dozen different problems, with potentially more on the way, including:
- Thoracic Outlet Syndrome- this is where the nerves that feed down into your arms get pinched by the shoulders.
- Shoulder Instability
- Pronator Teres Syndrome– where the median nerve gets pinched at the elbow, causing weakness and numbness in the hand.
- Wrist instability
- thumb instability and probably arthritis as well
- Even more stuff that I’m not remembering at the moment!
I hadn’t heard of many of these conditions before, but apparently, they are relatively common problems for Ehlers-Danlos syndrome patients. I definitely have a lot to learn! There are many doctors appointments, a lot of physical therapy, some x-rays, and probably several surgeries on my upper extremities looming in the future. I’m nervous about all that this entails, but also excited that there’s a chance that I could actually feel better and be in much less pain on a day to day basis.
But the most important thing Dr. Ericson did- even more important than any diagnosis or the possibility of feeling better- was VALIDATE my pain. I have been dealing with pain from these problems since I was a child, and I’ve been trying on and off for years to find a solution. I’ve discussed my pain with physical therapists, doctors, teachers, family members, and friends, but no one has ever been able to tell me what was wrong. Not only that, but they would usually just tell me to toughen up- phones and backpacks make everyone’s back hurt, and the pain that I was feeling was perfectly normal.
So when Doctor Ericson told me that I SHOULD be in pain and that most people would be completely disabled by these problems, it was such a relief. For years I have been pretending that the pain isn’t too bad, and trying to act and behave like a normal person. I’m really good at faking being healthy: but it has been at the cost of both my mental and physical well-being. Though I don’t want to be chronically ill, I realized this week that this isn’t something that I can change by simply having a good attitude. Instead of fighting my illness or pretending it doesn’t exist, I’m trying to accept my limitations and live as fulfilling of a life as I possibly can WITHIN them.
Giving up that longing to be normal has been so freeing. I am feeling more at peace with myself, and I’m able to accomplish so much more because I’m not wasting all my energy worrying about what I SHOULD be doing or wondering if I’m doing enough. My best is always enough. And yours is too! Our weaknesses DO NOT define us, but they are a part of us. Sometimes, they are a permanent part of us that no amount of hard work or positive thinking will ever fix. I’ve been diagnosed with Ehlers-Danlos Syndrome for over 6 years, and it’s taken me that long to finally understand this. My only regret is that I wasn’t able to figure it out sooner!
What is something that was difficult for YOU to accept about yourself? How did you learn to be at peace with it? Please share in the comments below!