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Excellent write up Mark – that’s exactly how I feel. Mostly I’ve learned to hide how I feel, hide the pain, stop explaining myself and when asked how I am I’ve learned to smile and say “yeh good”. Let’s face it people don’t REALLY want to know when you feel lousy as they can’t handle it and only want good news. Sometimes MS like other non visible illnesses is a curse and one you learn to live with alone – even some Neuro’s and Dr’s don’t *get* it so how can we expect friends, family and strangers to understand. Recently my Neuro and Dr said it’s not a painful disease – so what hope have I got explaining it to those outside the medical field if this is the sort of ignorance and arrogance shown by some Dr’s. I’ve even been judged by someone with an illness who believed their illness is worse yet they can work so why can’t I. Like it’s some kind of contest for whose the most worthy due to being ill and able to work. Crazy world we live in – sometimes it’s easier to just keep quiet and carry the burden alone. Anyway thanks for sharing Mark it’s much appreciated.
Yeah, SMILE AND NOD, that is a NECESSARY skill to have with MS it seems. And THAT is why I never compare illnesses, pain is relevant to the individual. -MATT
Don’t Think Too Hard: A Few of My Tips for Adaptation
Spot on, Mark. The frustration is endless. Widespread ignorance extends to my own family, friends and even my GP, who totally failed to diagnose until I got myself referred to a Neurologist. Even my Neurologist specialised in Epilepsy, not MS. It would be too easy to nurture a resentful anger, but that is no help in moving forward. My life and world was turned upside down, and I don’t think I ever felt so isolated. When I was still working, walking with the aid of two sticks, the amount of compliments “You’re looking well though”, was heartbreaking. But we grit our teeth and carry on. It’s only on sites like this that I stop feeling so alienated due to the “illness that isn’t” – well, it isn’t, after all – Illnesses have cures. I just keep an eye on all reports of hopeful research and pray for a cure one day.
Mark- Thank you for sharing. I’m a newly retired teacher. I was diagnosed with MS a year 1/2 ago. My neurologist said “You’ve got MS, but it’s not a big deal.” Upon meeting my Avonex nurse, she made it very clear that I feabie na pc was NOT disabled. I believed them and kept telling myself ‘it’s not a big deal.’ I’m not sure when it fully hit me that yes, this is a big deal. I went back to teaching last fall and almost made it through the first trimester. I got the reasonable accommodations, and gave it a go. Long story short, my early disability retirement became effective early this month. While I am thankful for that, it’s not nearly enough to help get our four children through college so I’m going to have to find other part-time employment. Since I’m not disabled I should be able to find something. I can’t drive much anymore, my cognitive delays are driving me nuts, my legs and feet haven’t stopped tingling for months, I use a cane, vertigo can strike at any moment and brings me to the floor instantly, but I look great! I know that another opportunity is out there, but this frickin’ disease sure limits us. It helps tremendously to have this sounding board to share with others and I’m frequently amazed to find out how much we are all on the same page as we learn more about creating our “new reality”. People keep saying that great progress is being made toward MS treatments. I hope so, because it is a big deal.
