Navigating Exercise with a Rare Disease: What works for you?
Living with a rare disease often means standard fitness advice just doesn't apply to you. We'd love to start a conversation about how you approach physical activity and movement.
What are your favorite ways to exercise or move your body? What are the biggest barriers you face (like fatigue, pain, or lack of guidance), and how do you adapt? Share your go-to modifications, victories, and frustrations so we can learn from each other!
I have dermatomyositis, which affects my muscles. I thought if I could just keep exercising somehow, it would build them back up... that's not how it works. I have finally accepted that I need to pace myself and use what is currently "still working". My doctors have patiently explained this to me over and over, but it took SO LONG for this to sink in! I had been so active-constantly on the go-and this has been a BIG ACCEPTANCE for me (actually, an ONGOING acceptance). I take note of what muscles are weakening and how to work around them to get myself going. My biggest fear is when I will have to rely on a walker or wheelchair. Losing independence appears to be a major factor.
, I think you really hit the nail on the head when you talked about ongoing acceptance. I feel like that's the key to so many things in life we face! Whether it's the ending of a relationship, losing a job, life not going the way you thought it would or changes in your physical body that you can't stop, acceptance is HARD but such a growth opportunity. Still. I wish we all could opt out of this particular growth opportunity 😉 .
I hope you keep as much muscle strength as possible for as long as possible and that in the meantime, continuing research will bring new treatment options onto the market. And, while I will never minimize the impact of having to use mobility aids on one's sense of self, I know that many people are pleasantly surprised that, when the time comes, those mobility aids actually give them more of a sense of independence, not less. They find they don't have to rely on others as much or plan as meticulously around their energy/strength levels. The aids can be a bit of an insurance policy, if that makes sense. Still, I do hope you can avoid the mobility aids for as long as possible.
Thanks for sharing a bit of your story and your wisdom. And may all of us remember that acceptance is almost always an ongoing process, not a one time thing.
Thank you!
Best, Erin, Team Member.
