Being in a Minority and Feeling Isolated

Does anyone feel resentment towards those with MS who are better off than yourself? Not resentment towards healthy people without MS, but towards those supposedly in the same shoes, but whose MS hasn’t progressed as quickly or as far, and who can still function well in their daily lives despite their MS?

Let me explain where I’m coming from.

People with SPMS make up a minority

I’m classified as having the secondary-progressive type, and I know that people with SPMS make up a minority within the MS community (so do those with primary-progressive). Those with the relapsing-remitting type by far outnumber the former ones. I used to belong to that group for the first 16 years of my MS journey. During that time I felt I had a connection with others sharing the same fate.

But for the past six years I’ve been classified as secondary-progressive, and my MS has been progressing particularly fast and to a point that many with MS will (thankfully!) never have to face. Generally I feel happy for each and everyone of us whose MS is progressing only slowly and allowing them to lead a fulfilled life with minor limitations. I often hear of people who were diagnosed decades ago, and yet they are still walking. Yes, they may have their issues: Fatigue, perhaps some cognitive issues, or having to rely on a cane on bad days. But they can still function to a certain degree and have a life that to some extent resembles their life before MS.

Still a mystery

It’s still a mystery why some people’s MS is relatively mild, while others’ progresses more quickly or is more severe. Is it the DMDs, their diet, their general lifestyle, is it in the genes, or is it just down to pure luck? We may know one day, but we certainly don’t know now.

Many people struggle with the diagnosis of MS, although I feel that at least to some degree it’s not the symptoms they experience and the limitations they face in the here and now, but the uncertainty of the future. I was one of those who seemed rather unfaced by my diagnosis 22 years ago. Probably because I was in denial. When several years later my symptoms became more obvious, and I could no longer deny that I had MS, I seemingly took it in my stride. There was a moment of acceptance, when I had to admit to myself that I no longer belonged to the healthy part of the population, that I had a chronic condition that forced me to slow down and adapt my lifestyle around the disease, and which may get worse over time. But I felt that by accepting that, I could move on.

Of course there were times when I wished it all away, wishing I could go back to my former healthy life, jumping out of bed and under the shower in the morning in five minutes flat, or working long hours at the office, with energy to boot. Yes, there were times, when I was sitting in a street cafe, watching people walk by, thinking how nice it would be if I could just get up from my chair without even thinking whether I could keep my balance, and walk alongside them, without having to pace myself, or without having to rely on a cane for support. But never did I feel resentment towards all those healthy people, or at least not as far as I recall. They were in a different category, beyond my reach. There seemed no point in comparing myself to them, although at one point in the past I had been one of them.

My deterioration has been fast

But what happened over the last several years is that I seem to have developed a resentment towards those with MS who seem to be getting a better deal than me. Granted, I got a crappy deal: My deterioration has been fast. I haven’t been able to stand for the last six years. I can no longer transfer by myself. My left arm and hand are paralyzed, and my right side is getting weaker. My days revolve around my lengthy morning routine to get me up and into my chair (and vice versa at night), personal care administered by others, physical therapy to at least try to hold on to the little ability I have left (though gradually losing that battle), Internet, TV and napping. that’s my day in a nutshell.

So when I read about so many people with MS, who can still go out and work, albeit with some limitations, or whose symptoms can be lessened or relapses prevented through medication, I’m outright jealous. Jealous because, although we share the same disease, they are getting a better deal than me. Non-disabled people are in a different category, so I can no longer identify with them, nor do I want to. It’s a different league altogether, so it’s not relevant. But people with MS are in the same league, so I feel I should be able to identify with them and compare notes. Yet, I find myself unable to do so because the majority can’t identify with someone like me, whose ms has progressed this far. And although I know it’s wrong, and I feel bad for doing so, I resent them. Or at least the fact that they got a better deal than me.

Little in common

Most chats I have with others online fizzle out after a relatively short time because we seem to have so little in common. MS, yes. But they seem unable to relate to my feelings and my daily life – and vice versa.

I know, I’m a minority. Not as someone who has MS among a population where the majority of people obviously don’t. But as someone with SPMS, which makes up only a minority share among those with MS. And even as someone with a severe case, within the group of those with SPMS. A minority within a minority.

If there were more of us – people with advanced MS, who can no longer lead an independent life -, would that make me feel better? It obviously wouldn’t change my daily life, but something inside of me thinks that it would make it easier for me, as there would be more people that I could relate to and compare notes.

Those may be strange thoughts, and if anyone feels offended by this, then I apologise.

However, I do wonder whether there is anyone in a similar situation who – at least from time to time – harbours similar thoughts – and is struggling with them.

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