Today it was brought to my attention that a fellow RSD-er was complaining to a friend of mine about the fact that I’m not open enough about my struggles. She doesn’t understand why I don’t like to talk about my RSD to her, when she talks about her pain daily, and she doesn’t know why the treatments that worked for her didn’t work for me. Let me answer that all for you…we are not the same. Yes, we may have the same diagnosis…but that’s the end of our sameness. Same diagnosis, different lives.
Part of the beauty of life is that we are all different. If we all looked the same, acted the same, and lived the exact same lives, we’d be more like robots than humans. Frankly, life would be a boring, pointless mess. Instead, we all have unique personalities and go through various experiences that affect us in different ways.
Aside from the general uniqueness of humans as a whole, we RSD-ers each have our own journeys to travel and battles to fight. RSD isn’t a cut-and-dried diagnosis. Even from the initial presentation, our pain can show up in a variety of ways. For example, my RSD is very visible with swelling, discoloration, contractures, and (now) ulcers. However, I have friends who never present with swelling or any other major symptoms besides the excruciating pain. Some people have hypersensitivity; others can tolerate touch.
Once you get into the topic of treatments, it’s a trial-and-error sort of a deal. There is no cure for RSD, and there is no single treatment that works for everyone. The fellow RSD-er that I mentioned underwent a procedure that changed her life. For years, she and others bugged me about trying it. When I finally ran out of options and went into the OR last year, they expected it to work just as well for me. To my great disappointment, the procedure was not a success for me. Some people are able to manage their symptoms with medication; others use acupuncture and alternative options. It’s amazing how wide the spectrum of RSD diagnoses and treatments really is.
Some people want everyone to know everything about their lives; others don’t. Personally, I am naturally reserved and quiet. I only choose to share the really deep struggles with specific people who have gained my trust…well, and sometimes on this blog. I don’t talk to everyone in my life about my RSD because not everyone understands. For some, they understand but they give bad advice or pressure me into doing things I’d rather not do. Others have RSD and think that we are the same person because of it, and they aren’t able to understand when I don’t want to talk or when a treatment fails. If I talked about every struggle, every ache and pain, and every worry in my life…well, my words would never end. I don’t want to be “that person” who wallows in her disorder rather than exploring and enjoying the beauty of life. I find it easier to simply write out my thoughts or talk about my struggles with the few people who I know I can trust…the ones who care and who listen without judgment.
Now, I’m not saying that we RSD-ers can’t relate to each other at all. In fact, I think it’s beautiful that we have a common thread with what we’re dealing with. All I’m trying to say is that we all face different monsters and we are not exactly the same. We can relate, we can understand to a certain degree, but we cannot know exactly what another person has been through or feel the precise pain that they are in. We all deal with our problems in different ways, and we need to respect that without judgment.
College on Crutches 