Last updated: November 2023
Do you have any regrets when it comes to your MS medications? The question alone can tug at your heart. With MS being so complicated, unpredictable, and a bit mysterious, making medical decisions isn’t always easy.
We make decisions that we may now look back on and think – what was I thinking? Why didn’t I start medication sooner? Maybe you feel the opposite - Why did I jump on this medication so quickly? Why didn’t I switch medications when I knew one wasn’t working? Or, maybe you knew that you should have done something but didn’t – like be consistent with your medication.
MS treatment decisions are complicated
Not only is MS complicated, but the medications are too. They have the potential to help us manage the disease, but the moment that you have to give yourself another injection...and have another injection site reaction, it can leave you wanting to skip it and zone out to Netflix instead. Many people do exactly that. So, if that’s you – you are not alone.
And that’s exactly my point in this article today.
Many of us may carry a sense of guilt or regret about our medical decisions and feel like we’re alone in these “mistakes” or regrets. Talking about them together can make us feel less alone, and even more so, it can also help us realize that nobody has this all figured out. It's easy to tell ourselves the lie - that everyone has this figured out but you. And that's not true, we're all living this out in real time.
Ways to cope with treatment regret
So, what can we do with regret?
Acknowledge that we did our best
We've all had times when we've second-guessed ourselves in life and MS is clearly no exception. What I think is most important for us to know is that we made the best decisions based on what we knew at the time. As the saying goes - hindsight is 20/20. If we knew then what we know now, we may have made different decisions, but we had limited information then.
We also had limited emotional capacity too. I don’t mean this in a negative way. I’m saying it to acknowledge the heavy emotional load that we often carry when we’re newly diagnosed or changing treatment plans. It’s hard to think clearly when your emotions are so high. Again, I share this to encourage you to have compassion for yourself knowing that you were - and likely still are - carrying a heavy emotional load. You make the best decisions at the time knowing this.
Pass on the wisdom
Another really powerful thing we can do with regret is to turn it into wisdom that we pass on.
What do you wish you could have told yourself back then when you were making decisions that you now regret? Don’t just keep that wisdom to yourself. Share it with the members of our bigger MS community who are now grappling with the same struggles that you had. Allow yourself to be someone who can help to ease the road for those that follow you.
Allow it to connect us
On this note of community, we can also allow this conversation to further unite our online community here. Sharing your stories helps you and all the others to feel less alone. It also gives us the opportunity to support and lift each other up along this journey.
Please share your experience below. What regrets do you have and what advice would you pass along to someone who is newly diagnosed today?
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: