Sometimes I don’t know if something that I’m feeling or is happening to my body is “normal” or is a symptom of MS. Not the loss of function or outright things my doctor has told me are due to MS, but the little everyday things I might experience that don’t seem worthy of making a doctor’s appointment for. I feel like I’ve developed a tendency to blame things on MS even: I’m tired today– it must be MS. I have a headache– it must be MS, My arm feels weak, my vision is blurry, I feel like crap, it must be my MS acting up. This becomes a problem because sometimes the people who love and care about me will say something like “ oh yeah I’m tired too”, or “ my toes get tingly sometimes for no reason too”, and I reflexively get angry and snap something about how what I’m dealing with is because of MS and is likely 10x worse then what they’re feeling or will ever feel.
One of my goals this New Year is to do a better job of tip-toeing the line between defending my personal experience and accepting the subjectivity of experience. It’s true that my loved ones may never know what I feel but I’ll never know what the experiences on the extreme ends of their spectrum feel like either. I find it’s hard to let your guard down and accept that when someone tries to relate what they’re feeling to how you feel, it’s not necessarily them trying to belittle your experience but them trying to relate and understand what you go through. Being young and being diagnosed with MS really turned my world around as I’m sure it did for a lot of you, so I have this instinct when people try to relate to scream out “ YOU HAVE NO IDEA WHAT IT’S LIKE” .
This approach though seems to harbor a lot of negative energy in regards to how I feel about my experience and how I relate to other people. If I’m constantly drawing a line that divides me from others and verbally reinforcing in my relationships that they will never be able to relate, it’s natural that as I live with MS I will feel alone, like no one understands me, and group every little unpleasant feelings in my body under the category of MS with the assumption that for me it will always be worse. That scenario sounds all too scarily like letting MS negatively dictate my behaviours and attitudes, and I’m not okay with that. If you’ve ever felt like this and can relate to this story at all, I’m suggesting we try to bring more positivity and acceptance into how we view ourselves, our health, and interact with others. This is what I’m going to work on this year so I’ll keep you all updated on my progress.