So here’s the thing. I’ve done these posts for the past few years, and there have been a couple of reasons for it. Partially it was to talk to people about having MS and shining a spotlight on that experience. The other reason, frankly, was my own mental well-being. I’ve been living with MS for about ten years now, but I’ve been living with the symptoms for a lot longer than that. My first symptom of having MS was waking up completely blind in my right eye, which threw me for a much bigger loop than I was willing to admit at the time. Dealing with losing my sight and the later diagnosis of MS has taken a long time, and frankly, I’m still working on it. I’ve done lots of things to cope with the cards that got dealt with me. I’ll admit, not all of them were good things, but it’s important to talk about them all the same.Denying it – Speaking of not doing the right thing; When I first woke up blind (after taking a couple of days to get myself checked out), I wanted to go back to doing things the way they were before. The problem with trying to go back to normal when you’re not (in my case, I went half-blind and at the time had no reason why), you need to adjust to your new reality. I decided that I didn’t have to. When you spend your life with 20/20 vision and then lose half, that affected me, I learned this through (I’m sorry to say) the loss of two different jobs because of my behaviour or my inability to do the jobs that I was assigned. Denying it was getting destructive for me, and so I didn’t deny it to myself anymore.
1) Feeling sorry for myself – This, if I’m honest, was the darkest part of my journey. There were several years between when I went blind and when I got my MS diagnosis. One of the parts of my MS, which is a good thing, is that I remyelinate (Or I grow the myelin to protect the neurons in my brain back) really well. This means that I’m (thankfully) Less susceptible to prolonged attacks. While I was on my journey to diagnosis, It did make it super hard to get a diagnosis. I would get a yearly MRI, and It wouldn’t show anything. For a number of years, I thought that I was the one at fault. No matter how many times my loved ones told me that I was not to blame for this or that it wasn’t my fault, there was still the thought in the back of my head that kept me depressed for an extended period of time. It was me; I was broken. If I could do anything I wanted, I would figure out how to go back to that time and give myself a hug and say that there would be light at the end of the tunnel and it would get better.
2) Hiding it – It’s strange, but for the period of time that I decided it would be better to hide the fact that I had MS, I don’t regret it now. I don’t regret hiding my disease, and while I had an excuse for it at the time, upon reflection, I see that it was something else. At the time, I was at the start of a significant information management project when I got diagnosed. I was digitizing the filing system of the company that I worked for, and, in my head, at least, I didn’t want them worried about me not being able to function or do my job correctly, so I decided not to tell people. I did tell the people in my direct authority chain (my boss, my boss’s boss), but that was it. I didn’t want to give people the impression that I couldn’t do my job. I think that the real reason that I didn’t want to tell anyone was that I didn’t want to give MYSELF the impression that I couldn’t do it. Yes, I suppose it’s a form of denial, but I think I was trying to protect myself from hurting my own feelings. Do I think I would do the same thing if I had to go through it again? The short answer is “probably….?” only because I’m so used to talking about it now that I have a level of confidence with my MS that I didn’t before.
3) Accepting it – I’ll be honest, it took me at least four years to accept my MS as a part of my life. Yes, I was taking my medication and going to the doctor and getting the regular MRIs and doing all the things, but I don’t think I truly accepted the fact that I had MS. It took me getting involved with a fundraiser that donated to MS to acknowledge the fact that I had MS and accept the fact that I had MS. Once I accepted it, I lived with it and made it a part of my life.
4) Talking about it – So now we come to where I am currently in my MS Journey. I have no problem talking about my MS (obviously, I’m blogging about it…), and I’ve found that sharing my experience with people has made it so that they want to share their experience with me. It also means that, for the people who are not as far along in their journeys, people who I talk to can see that there is life with MS. I have also found that the more I talk about it, the easier it is for me to talk about it. It’s gotten to the point that I LIKE talking about my MS and the things that I went through with it.
Interestingly, the more I talk about it, the more people want to talk to me about it—some looking for advice and some looking to offload some emotions (which I completely understand). Talking about my MS with people has also allowed me to get involved with raising money to find a solution for it.
I’m hopeful that there will be a cure found one day so that people in the future won’t have to go through what I and many others like me have. The problem with getting MS is that there is no A to B to C; there is no straight line of progression. This means that there are almost as many different journeys with MS as there are people diagnosed with MS. Mine is only one of many journeys which have happened and are continuing to happen. One of the things that happened to me during the early days (once diagnosed) was that I felt extremely alone. Not because there weren’t people around me, but because no one around me was like me. One of the best resources I found that helped me was the MS Society of Canada. They showed me that I was not alone and that there were more people like me.
If you wanted to see any of my previous posts like this you can check them out below
Information Manager with Multiple Sclerosis
Information Manager with MS Part 2
Information Manager with MS Part 3
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love this. Keep speaking your truth!