On here to rant really because I really need to. My husband was diagnosed a few years ago with Relapsing Remitting MS. We are very lucky in some respects in that he is reasonably well and up till recently had few relapses. Then he had the Covid Vaccine and it caused a relapse which has taken a while to bounce back from. My frustration lies in the fact that our extended family just don’t seem to see the impact the condition has on both of us. There are unrealistic expectations of what J is able to do and I just think the impact of his diagnosis has really not registered with them. I feel really frustrated as I’m struggling to feel understood or to particularly articulate how I feel at times, which at the moment is pretty angry to be honest. Not sure if anyone else has felt the same.
Sorry to hear how you are feeling. It can be very difficult for people to understand a condition that is not always obvious. I understand your frustration which leads to anger. I have learned that angry discussions are not that productive, so if at all possible try to compartmentalise and keep the anger for a safe place to let off steam. When you explain stuff to extended family you might need to be blunt and not pull punches. Try examples, if people don’t understand heavy limbs get them to strap a weight on for half an hour. If they don’t understand limited dexterity get them to do laces or shirt buttons with thick gloves on. Another thing I did was to show some videos from the Shift.ms website. Good luck
Nice examples Mick. There’s also a webpage from the MS Trust that might help: https://support.mstrust.org.uk/file/store-pdfs/Explaining-MS-to-others-WEB.pdf
It’s not easy explaining MS to family and friends. Most of my friends get the idea now but my family … perhaps they need a bit longer than 24 years to get the message.
Unless you want to eliminate these people from your lives, just bite your tongue and keep ranting to us. With them, just keep explaining yourself over and over again in the hope that eventually it’ll sink in.
My mum still wants to park at the far side of the parking lot with me in the car, because “walking’s good for you”. My uncle lectures me constantly for not visiting her more often, in spite of the fact that she’s 20 km away and I tell him weekly that I can’t drive that far. It’s a constant work in progress, and it does get very frustrating.
He is a lucky man, having you on his side. I can definitely understand your frustration on his behalf. Some people don’t know much about it but are willing to learn. But quite a lot of others people are just wilfully ignorant and intend to stay that way for a variety of complicated reasons (not wanting to see because they wish things were otherwise, for instance), none of which are within your control. Do what you can with friends and family in the former camp. For those in the latter camp, try not to waste your emotional energy: you need all of it to make the best life for the two of you. Please know that you are not alone.
Thank you. That is sound advice