MS: The Disease of Patience
Multiple sclerosis is a disease that revolves around patience. There are many aspects of living with MS that force you to slow down, whether you like it or not. It’s also a disease that seems to act patiently like a predator, silently waiting in the bushes to jump and attack its prey. Yep, life with MS is full of patience.
Everything is so slow
There are so many ways that MS feels incredibly slow to me. Getting diagnosed is definitely one of them. It took me a while to get diagnosed over two decades ago, but these days, listening to the many others who are on this site, it seems that it may take even longer for some people to get a diagnosis. It’s very difficult to be patient while you wait to find out what is wrong with you. It’s terrifying and takes the idea of being patient to a whole new level.
I’m not sure there is any exercise in patience as difficult as waiting for an exacerbation to finish. Steroids are supposed to hasten recovery, but it never feels that way. I’ve had so many relapses where I’ve gone to bed at night with the hope that my numbness would go away, that my speech wouldn’t be slurred, or that I’d be able to walk or use my arms again in the morning. I’d then wake up and have my spirits absolutely crushed because I wasn’t feeling better.
I can’t even imagine how many times I’ve had an exacerbation and told myself to "relax and be patient, maybe tomorrow will be better."
Many of my past doctors have really wanted me to be on a treatment for a full year in order to determine its effectiveness. That’s always felt like a very long time to see if something is working. If it doesn’t work, that is a long time when the disease may be active and wreaking havoc on my nervous system.
So many appointments. Doctors, MRIs, blood tests, various therapists, the list goes on. Life with MS feels like I shuttle from one appointment to another, and each of those appointments requires so much time waiting to be seen. Often it requires being patient to get an appointment in the first place, then patience while in a waiting room, and then even more patience while in a second room while you wait to see the doctor. It’s all so slow.
Our symptoms slow us down as well. Fatigue and mobility issues force us to have patience when it comes to doing daily tasks. Cognitive issues can slow down our ability to understand and even communicate. The many symptoms of MS conspire to slow so many aspects of our life down, forcing us to practice patience.
The disease is patient, too
When I first discovered some problems that would turn out to be MS, it felt so sudden. I woke up one morning, and it was as if the disease had hit me overnight. After getting diagnosed, though, I was able to look back and realize that MS had slowly been causing problems for a long time. It was not until it had been active and done a bunch of damage that the damage was enough for me to notice. It had attacked me slowly and silently over a long period of time. It was very patient.
That first exacerbation wasn’t the only time MS demonstrated its patience with me. Over the years, I’d have relapses and I’d recover, but each relapse took a little more from me. Then one day, 15 years or so after being diagnosed, it surprised me again when I became disabled. It took its time over that entire period, it demonstrated great patience as it slowly whittled away at the myelin surrounding my nerves, letting me recover just enough each time to feel like I was unstoppable. Then one day it pounced, and the damage all added up.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
Were you misdiagnosed with something else before receiving a MS diagnosis?