Lessons from My First 10 Years of Life With MS
2020 is nearly here, which is when I'll be entering my tenth year living with multiple sclerosis (MS). I was diagnosed in 2010, just after I turned 20 years old, so with the exception of about two months, I'll have spent all of my 20's with this chronic illness. This decade of my life came with so many ups and downs (immeasurably massive understatement of the year), and because of that, I can say that I definitely learned a lot. A lot about MS, myself, others, and, well, life.
Forced to observe life through a unique lens
Living with MS has, in a way, forced me to observe life through a very unique lens that I'm not sure the average person in their 20's has the ability to look through. Seeing life through this lens was miserable, and I would have given anything to see life through the eyes of a typical 20-some-year-old. But now that I'm almost 30, I can say that I really do appreciate what I've learned from my many chronic illness experiences.
A miserable learning experience
Before I move on, I just feel like I have to make something clear. When I say that I've learned a lot, I don't mean that it was like going to school, and MS was my teacher. "Yay, learning is fun!" No, that sounds way too nice and kickback, doesn't it? When I say the last ten years of my life with MS was a "good learning experience," I mean it was a learning experience, much like touching a hot iron is a good learning experience. The PAIN of a hot iron is terrible, and it might even leave a scar, but chances are, you'll never touch an iron again before checking to see if it's plugged in or not. That's the kind of learning experience that MS was to me. The lessons that MS taught me were a miserable learning experience every step of the way, but nonetheless, I learned quite a bit.
Hoping my 30's will make up for my 20's
I genuinely believe that everything I've been through with this miserable disease has, in some way, shape or form, helped shape me into a better person as well as lay the foundation for the next decade of my life. I mean, don't get me wrong, part of me feels totally ripped off; my twenties sucked compared to the lives of everyone I grew up with (at least how their lives appeared to be). From my perspective, while all my friends were having fun, living life, and getting ahead, I was often feeling miserable, dealing with medical stuff, and falling a step or two or five behind in the game of life. So I can't help but hope my thirties will, more or less, "make up" for my twenties; that I will finally be able to catch up and even get ahead for once.
What I've learned after my 10 year battle with MS
So what exactly have I learned after ten years of battling MS? Well, let's go over just a few of my main takeaways in no particular order.
The most predictable characteristic of MS
One thing that I learned very quickly (as I'm sure most people living with MS do) is that the most predictable characteristic of MS is that it's rather unpredictable. You might feel fine today and wake up feeling terrible tomorrow. You might feel "stable" for months, even years, and then, for no apparent reason, get blindsided by an exacerbation. This makes making plans very difficult, especially long-term plans. For the longest time, I was afraid to commit to anything more than a few months away because, "What if my MS starts acting up?" Looking back, I can think of so many instances where I skipped out on events because of this possibility only to later find out that I actually could have made it. So while I still find myself hesitating to make plans, I am trying to just "go for it" when an opportunity comes up, because I've learned that I can't preemptively let MS keep me from living my life.
Slower is faster
Next is something that I still struggle with despite having been "burned" over and over and over again; it's important to listen to your body and take all the breaks that you need, because when you don't? When you're working on something and push through exhaustion and fatigue? You're almost guaranteeing that some of your symptoms are going to start to flare or maybe, you'll end up pushing yourself into an exacerbation. Again, I know it's hard to not push through it and "get it all done." Like I said, I still struggle with this even though I am painfully aware of the probable consequences. I try to think about it like this. Slower is faster. If you take your time and go at a steady pace when working on something, you'll probably finish faster than if you try to rush through it and end up putting yourself out for a day or two because you pushed yourself too hard. It's OK to take multiple breaks to rest. Slower is faster.
Going at your own pace
And that leads me to what might have done "more damage" to my life than anything; comparing myself to others. I'm sure most people have a hard time looking at where other people are at in life or what others are capable of, without thinking "that should be me." Without thinking, "I need to push myself harder so I can keep up," which only pushes you (talking from experience here) into the situation I talked about above. Pushing yourself because you're trying to maintain the same pace that others can. This one is easy to depict; imagine you are a runner participating in a marathon (we'll call that marathon LIFE), but you are the only one who has to run with a bag full of rocks on their back (and we'll call that bag full of rocks MS). Is it really realistic to think that you, with your bag full of rocks, can possibly keep up with everyone else who doesn't have to carry all that extra weight? They say that life is a marathon, not a race, and that couldn't be truer when you're living with a chronic illness like MS. You have to go at your own pace.
Everyone's experience is different
That also applies to others with MS because everyone's MS is different. You might have the same exact symptoms as someone else, but you probably experience them at different levels of severity. Even more likely is that you're personal situations are different. Life is, for virtually everyone on Earth, full of stress, and just because you have MS doesn't mean that life is going to hold back on any of the other crap it's dishing out to the world. Who knows what kind of stress someone else with the same set of symptoms as you is dealing with, and who knows how that stress is affecting how they experience their symptoms. So even if you can strongly relate to someone else who also has MS, you can't really compare yourself to them either.
What ultimately matters
So, if I had to sum up everything that I've learned in the first decade of my life with my MS, I would say that you have to learn to expect the unexpected and go with the flow at your own pace because otherwise? You're setting yourself up for failure. I've learned all this the hard way, but what ultimately matters is that I've learned.
Life is a learning experience. Just like how everyone's experience in school is different, everyone's experience in life is different. If I were to look at the entirety of my life as a literal university, I would say that MS is just one of the classes I'm taking. It's definitely the most difficult class I'm enrolled in, but without a doubt, it has taught me more than any other class has. Hopefully, with all that I've learned from my first ten years of life with MS, my next ten years will be easier, will be better.
How many specialists did you see before finding "The One"?