I moved at the beginning of the month and I went to my local auto insurance broker to update my address on my license and the woman behind the counter asked, “Do you have any conditions that affect your ability to operate a motor vehicle?” Without thinking I said no, up until this point I had been entirely healthy (no surgeries, no hospitalization, no broken bones not even a cavity) and it was automatic but as I left the building it got me thinking. I knew that should I ever relapse and my ability to drive was affected my medical provider would notify my insurance provider but the whole thing got me thinking about disclosure.
My parents and siblings knew immediately, in part because I was initially told I had a brain tumour and there’s a big push to notify family to be there. It might be terrible to say but I almost wish I didn’t tell them right away. When I was in CIS limbo I would just talk about how I was feeling just to get it off my chest and they often would say, “You probably don’t have it, try not to stress.” It got really frustrating. It was frustrating because I was in a state of constant paranoia – I didn’t trust my mind or my body anymore. I was hyperaware and I could no longer tell if the things I was feeling were normal every day sensations I hadn’t taken notice of before, or relapse symptoms or all in my head and brought on by my intense period of constant health related anxiety. Every line of communication I would try to throw out there was cut with a simple reassurance. They just wanted to make me feel better but ended up making me feel worse. A couple months ago the entire left side of my body went numb for a couple weeks. I remember going to bed in tears – feeling like I had no control of my body anymore. That it didn’t matter how badly I wanted it, or how hard I was willing to work I couldn’t just “work it away” like I could rehab an injured muscle etc. I tried to express my fears and feelings and was met with. “I’m so sorry you’re going through this but I don’t know what to say.” (*I should note that I don’t blame anyone for how I felt and I am forever grateful for my family’s love and support. It was as difficult for me as it was for them and neither of us really knew how to help each other). I ended up developing a fear of telling people thinking they’d just feel sorry for me or their behaviour towards me and perceptions of me would change.
I’ve been on various MS society website and read up on disclosure which was incredibly helpful. For the longest while I had a huge fear about discussing MS – even while I was in CIS limbo – partly because I wasn’t sure what people were going to think. I didn’t want to tell my nearest and dearest friends because I knew them well enough to know if their behaviour around me was changing. Now that I’m more comfortable and better informed about MS I’m thinking more and more about disclosure outside your family and closest friends. Employers, coworkers, school(?) – the whole thing makes me nervous and I feel silly about feeling that way but it all feels rather strange.
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