What People's Pandemic Response Said to Me About My Life

Several weeks back, I wrote an article that was really a missive to those who don’t suffer from chronic illness but were now, because of the COVID-19 pandemic, beginning to experience a life that many with a long term illness have known for a while. I welcomed them to our world, reminding them that what they are now encountering is how many of us have already lived for years.

Seeing people struggling to adapt

As time has passed, I’ve had a chance to see how people are dealing with this kind of life, my kind of life. After only a few weeks, it appears that many are struggling to adapt to the kinds of things the disabled know all too well. Seeing this has obviously filled me with all sorts of emotions. What I want to focus on here is this though: if this life is so miserable to so many after just a short period of time, what does that say about my own life?

Fears that aren't new to those of us with MS

People are complaining about having to stay home. They’re worried about money. They have to fear easily catching a virus that could threaten their life if they have even the simplest of social contact. They are left to fear for the future of their employment or business. They’re sad, they’re bored, they’re going “crazy”.

I had no one to commiserate with when I had to leave work

As I’ve said previously, yea, I get it, I’ve lived that way for years now. While I now know others in the same predicament, when I was first classified as disabled, I had no one to really commiserate with about the ordeal. Though I suppose I should have been more prepared, it still happened quickly for me. I had an exacerbation, left work, and never made it back. I never really recovered all the way from that exacerbation. Years of relapses had laid the groundwork, done the irreversible damage to the myelin around my nerves such that I was finally too damaged to function the way I needed to for my career. Seemingly in the blink of an eye, my life was completely changed.

A new normal

That was 6 or 7 years ago. I’m now 42 and disabled, unable to work in a career I spent my entire life preparing for and advancing through. In a short period of time, I went from making six figures to living on less money than I earned at my first job out of college. Financial impact aside, I still struggle physically from my disease, with pain, fatigue, spasms, and many other symptoms that impact my quality of life on a daily basis. I spend excessive periods of time isolated because I can’t drive or my body won’t allow it. Along with that, the dramatic change in life status changed many friendships; suddenly, I had much less in common with people that I thought. The loneliness all this creates, plus feeling like I lack a purpose because I’ve lost my career has severely affected my mental health. So yeah, life has been a bit challenging in this new normal.

But it’s not that bad

The interesting thing about my life though, no matter how much I talk about depression or how my other symptoms affect me (I sometimes worry that readers may think I’m far worse than I really am), I still tend to think of my life as pretty decent. I still have a lot of good times. While it’s been difficult, I’ve adapted to my life. It’s not what I’d like and definitely not what I expected, but it’s not a bad life. I’d like to think I’ve done well with the hand I’ve been given. Like everyone’s life, it’s still a work in progress that I’m constantly trying to improve (despite setbacks - many, many setbacks), but overall, it’s not that bad.

How others' reactions have made me feel

Seeing the reactions of so many people to the COVID-19 quarantine has certainly shaken me though. I see so many people struggling with aspects of the pandemic that I’ve lived with every day for years. It’s made me look at my life and start to question it. Seeing people freak out about conditions that have been common for me has made me think less of myself and my life. I’ve seen people complain after being stuck home for one or two weeks. Ugh, that’s nothing for me. If my lifestyle can make people so unhappy, so quickly, what does that say about my life? Seeing everyone’s reactions to the quarantine and other aspects of the pandemic has made me think that maybe my life isn’t as decent as I normally think it is. This has been my biggest issue during all of this, seeing how people adapt to my normals, even though they know it will be temporary. It has both made me a bit more unhappy with my own life, while simultaneously making me judge others for the way they are handling it.

Pity and strength

While I’ve struggled seeing how everyone is handling this, I try to remember that it probably wasn’t easy for me at first either. Then I remember that it’s actually never easy for me, that I just make the best of it. Part of me also gets upset that when all of this is over, I’ll still be spending long stretches stuck at home while they are all back to their normal. I get past all of this by remembering that I’m different from them and then I pity them a tad. I have the hard lessons that my illness has taught me on my side and I’m better for it. MS has taught me a lot about falling, but even more about getting back up. This disease has molded me into someone who can get through anything and I’m thankful for that. While it hasn’t always been pleasant, it’s made me stronger in ways most other people could use right now.

Thanks so much for reading and always feel free to share!

Devin

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