The MS blind spot

I’ve been thinking about this for a while; years really. More so now that my life is so empty and I’ve got a lot of time on my hands to do nothing but think.

It’s really bizarre to me, but very few people actually acknowledge my condition. Nobody really asks me about my disease. Nobody asks me how I actually am. It’s like the elephant in the room. People can see I’m struggling, but I feel that acknowledging it would mean they have to accept it and do something about it. Some of my oldest friends shy away from it. It’s a massive part of my life, and having it ignored makes me feel unseen.

I don’t know if it’s because these people knew me when I was able-bodied, and watching me deteriorate is really hard for them. I have to live it, every day, and yet people can’t suck it up enough to find time for me and make life a little bit more bearable. I seem to get more acceptance from people that have only known me as I am now. They don’t know me as anybody else.

I would love for people to tell me what it’s been like for them, seeing their friend go from being the vibrant, outgoing, festival and night out loving DJ to a person basically housebound and totally ruined by MS.

I just can’t imagine what it must feel like to see someone deteriorate and struggle. If it wasn’t me, and it happened to one of them, how would I feel? How would I react? I know my mum finds it really hard to see me in this state. Nobody wants to see their child go through what I’m going through. It’s easier for a lot of people to just pretend it isn’t happening. It obviously is. I’m in a wheelchair. I am in constant neuropathic pain, I have a permanent catheter because I can’t pee, my bowels don’t move, I can’t see properly anymore, and I generally feel like my body is shutting down. And yet nobody asks me about it. Maybe it’s just too big. And as they say, ‘denial is not just a river in Egypt’ (just my little joke).

I’ve got a good friend whose brother died with MS. At the end, he was in a care home, and my friend bumped into his best man. Her brother had got married way before MS and the best man was his best friend. When Pete got to the point where he needed to be in a home, his best man never visited him. When my friend bumped into said best man, and asked him why he never visited Pete, he said that he couldn’t bear to see his friend like that and felt bad that he got to live a life and Pete didn’t.

Maybe that’s it… Survivor’s guilt.

However, for me, having company from old friends and actually being asked what’s happened is so important. I feel totally unseen and totally irrelevant. MS is a huge part of my life and although I said in the past that I’d never let it define me, it is now so entwined with my day-to-day life that I fear that it does. I don’t get time to invest in my interests, because I’m too busy battling with fatigue, or I didn’t sleep well because I woke up in screaming agony, or some other drama has derailed my day. It’s just relentless. I don’t get a day off and I don’t get a break. I don’t really know who I am anymore. I love science, I know a lot about the environment, I’m really good at maths and a lot of other things, I’m articulate, and I’m not looking too dusty for someone in their 40s but… But. I feel like it’s all a big waste now. I push people away for a number of reasons and when I do see people I have to try and be the person they want me to be, not who I really am, because I feel like people just don’t want to know. I feel so unseen. I don’t think people want to hear the reality. When people say, ‘how are you?’ they just want to hear ‘I’m ok’. They don’t want to hear that I haven’t left the house for a week, I spent the night on the floor because I couldn’t get up, or I’ve spent another day feeling rubbish because I can’t accept my life. But then what is the point of telling them? What can they do about it? Nothing. So I guess it’s just up to me to deal with it and endure it and that’s just life.

So as a result, I keep it all in, and pretend everything’s fine. It eats me up inside. I try and try to stay positive, but I feel like I’m constantly struggling to just keep my head above water. The MS blind spot really doesn’t help. This is my reality. I also know that people don’t come to me with their problems because in their heads, mine are so much worse. I feel totally shut out, but on the other hand it is painful to hear about ‘life outside’. I would dearly love to have the sort of life drama which involved my van breaking down on the motorway (this has actually happened to me in Spain, but that’s another story) or some other such thing, but it’ll never happen now. I’m good in a crisis and have always kept a clear head, and now my crises involve such questions as ‘how am I going to get off the floor?’ ‘who can I call to help me at this point?’ etc etc.

Am I just making it worse for myself by keeping it all in? I have had years of experience of the MS blind spot and I guess I’ve just learnt that people don’t want to hear it, so I don’t say it. How would you even respond? I don’t complain (much) and I just get on with it. C’est la vie!