Things I'd Have Done Differently
Last updated: September 2022
Living with MS longer than I’ve lived without it has definitely given me some insight. It’s hard not to look back and wonder what would have happened if I’d done some things differently. As they say, hindsight is 20/20, and I have knowledge now that I didn’t have back then.
Things I'd do differently while living with MS
I don’t regret my choices along the way, I think that’s a slippery slope that can lead to a whole lot of sadness and agony. That said, I gave some consideration to what I’d have done differently if I knew then what I know now. I still have no regrets on my end, but maybe this can help someone. So that said, these are some things I’d have done differently if I’d had the knowledge I have now.
Sought out others like me
In the early days of my life with MS, I should have done more to find others with the disease. The internet was still a pretty new thing, so it wasn’t that easy, but I’m not sure I would have looked really hard even if I did have the options. I went to a couple of support groups and I was the youngest participant by like 30 years each time. That made me give up. It really wasn’t until years later that I found MultipleSclerosis.net and really started reading and interacting with other people that were going through the same things I was. That made a massive difference in my life. Not only to feel like I had people in common with me, but it gave me a way to share what my life was like with my friends and family, but have it not be in my words. I could say, “Hey, read this, I go through this too," and that really helped some of them understand me a bit better.
Taken my mental health more seriously
We’ve come a long way with regard to the acceptance of mental health care (we have a very long way to go too). I was definitely guilty of the social norms at the time of “Hey, I’m a strong man, I need to just bottle this shit up and deal with it." That was wrong of me and absolutely had a big impact on my life. I look back now and realize I suffered from some mental health issues because of my illness. It’s important to remember that depression is not only sadness, it can manifest itself in many ways, including anger. If I could do it differently, I’d go back and make myself do some talk therapy, no matter how much I was against it at the time. I feel my life might be less lonely now if I’d done that then.
Been more upfront with friends and family
One thing I’d do differently would be to be more open about how MS was affecting me, both physically and emotionally. I dealt with a lot of pain before I ever mentioned it to anyone (including doctors) because I felt like I needed to just deal with it. I felt like my pain was to be endured like it was some badge of honor. I think if people knew how much my disease affected me, even when I looked absolutely fine, I think my life would have been better. I’ve no doubt that providing some more insight into what I was going through would have been helpful in the relationships and friendships that I ended up losing along the way. I’d have probably gotten better help too and maybe even switched medications much sooner.
Switched medications sooner
While no one knew it at the time, perhaps if I’d been following news about my disease, I’d have opted to switch medications sooner. While many of the highly effective treatments didn’t exist early on in my diagnosis, they did come out while I was still on the old standbys. We know now that treating with one of the highly effective treatments can make a massive difference if taken early on. I really think if I’d gotten on one of these medications when they first were available, I wouldn’t be disabled today.
Stayed on treatment
Speaking of treatments, if I could possibly change something, it’d be to maintain my treatment and make sure I followed the schedule for my medication. I went through a period where I didn’t have insurance and couldn’t take a disease-modifying drug. While I wouldn’t change the reasons for that, I have no doubt it impacted me later in life. Along with that, I wasn’t always faithful to my injection schedule even when I was on treatment. While on a once-a-day injection, I’d often skip days because I forgot or was simply too tired or simply couldn’t mentally handle injecting myself one more time. Sometimes I’d even then follow that up with multiple injections on one day to make up for it. I was stupid. If a daily injection was trouble for me, I should have sought out something different. The frequency and ease of taking your treatment are factors that are every bit as important as efficacy because if you don't take it as intended, then you have no real hope for it to work.
Realized feeling good doesn’t mean I am good
Another thing that I really wish I’d done differently was to make sure I really understood that just because I felt and looked good, didn’t mean I was OK. This very much relates to staying on treatment but it can impact other decisions as well. Looking back, the times that my disease progressed and did the most damage were times when I felt at my best. Silently, MS lurked inside of me and damage was occurring, but while this was going on, I was in peak physical shape and felt fantastic. It wasn’t until much later, when the damage had become severe that I knew what was going on. So if I could, I’d go back and remind myself that how I feel at any given moment has nothing to do with what the disease is doing inside of me.
As always, MS is one of those diseases where we are all a little different. We can have so much in common, yet so much different in the way the illness impacts each of us. These were just a few changes I’d make if I had to relive my life with the knowledge I have now. What are some things you’d do differently?
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
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