A month or so back, I noticed a couple interactions in the comments section of one of my articles that got me thinking. The interaction, nearly argument, was between someone who was recently diagnosed (let’s say under five years) and someone who has lived with the disease for considerably longer. The more recently diagnosed person was very spry, full of positivity and the “MS doesn’t have me” spirit. The more veteran of the two took offense and offered the “well, just wait a few more years” type of comment. It all got me thinking about the difference between the early part of my disease and now.
Now, as I feel we always have to keep stressing, we’re all different with this disease. Everyone’s journey with Multiple Sclerosis is unique. Symptoms, effective treatments, and severity of disability are just some of the aspects that vary person to person. That said, there is still a lot that can be similar between us too. One of those things I’ve noticed and experienced is a change that happens once you’ve had the disease for a long time (once more, this is not everyone, but still many people). It seems like once you’ve had this disease for a long time, it starts to add up. You start to see things differently. I think that’s one reason that people who’ve had the disease for a while often prefer my writing, rather than the more newly diagnosed who probably think I need to “be more positive”.
For my first 10-13 years with the disease, I was like most. I’d have exacerbations, they’d end (the words “relapse” and “recover” are so the wrong words for that cycle), and then I would get back to life. Normally I’d be back to the way I was or close to it. At least it would seem that way. Now, no matter what I was able to do when the exacerbation ended, I realize that damage was still done (and that that damage would plague me later in life). Those early years, I really thought, “OK, I can handle this, it’s a vicious cycle, but I can deal with it”. I was still able to work, and have a mostly normal life between exacerbations. I even ran marathons and still played hockey in those first ten years (never as well as I had before, but I could still take part). Even though I’d seen what MS can do, because my grandfather had it and was completely disabled from it, I figured that this was the future, I take medication and he didn’t, so I’ll be in a different situation.
I went through a number of disease modifying therapies before finding one that worked well. However, after that, I had some insurance issues when I switched jobs. I was suddenly no longer able to get my medication, so I decided that since I was relatively healthy and felt great, I could go without it. So I did, for a while. I felt fantastic too, even ended up in the best shape I’d been in since before my diagnosis. However, I was foolish. I’ve since learned the hard way that feeling good doesn’t mean the disease isn’t active. Eventually, life came crashing down and I had a massive exacerbation. The disease is still working in the background, no matter how you feel and look on the outside.
While going without a disease modifying therapy certainly contributed to where I am now, many people who have an average course of MS still tend to have a lot of problems after that 10-13 year mark, regardless of their treatment. I base that on the many people with MS that I talk to on a daily basis, which is significant (writing for a major website like MultipleSclerosis.net has allowed me to meet and speak with a lot of people who suffer from this disease, and I’m so thankful for that. I don’t say it enough, but I’m so very lucky that people will read what I’ve written). Again, we are all different, and that won’t be everyone, it’s just a majority of people I talk to.
Why is this the case? Well, exacerbations add up. That’s one reason I hate the term Relapsing-Remitting. When you have an exacerbation or “relapse” as so many like to call it, that myelin sheath around some of your nerves is getting attacked and eaten away. You can’t bring that back. The problem area may not always bother you, but damage is done. Eventually, after years of these incidents, you’ve got a lot of damaged areas. Once you have enough damage, you start having issues without having an exacerbation. All of the triggers we experience, like temperature and stress, begin to make life even worse than they did before because there are so many damaged areas getting affected at once.
So why talk about all this? Well, I want people on both sides to realize that there can be a huge difference between those are relatively newly diagnosed and those who have battled the disease for many years. Veterans like me need to not be so upset when we see and hear those who haven’t gotten there yet be so positive and active. That can be pretty hard. The more recently diagnosed also need to realize that because MS isn’t a big problem for you yet, that doesn’t mean it won’t be.
Thanks for reading!