MS Awareness: Your Support Matters
March is multiple sclerosis awareness month. Well, on the calendar it is.
But this past March, the world has been occupied with COVID-19. So, naturally and rightly so, our attention and efforts have shifted to keeping ourselves, our families, our communities and the world safe. Life has gotten insurmountably scarier for those of us who are medically compromised, and I imagine it’s intimidating for many others as well. I won’t attempt to compare COVID-19 and multiple sclerosis. However, the same empathy, compassion and support we desire for the MS community should be extended to people and families impacted by COVID-19. While we continue to support each other, I’m confident that our amazing medical professionals and government will get a handle on this crisis and life will prevail.
When it is all said and done, multiple sclerosis will remain. Things will quiet down and those of us living with MS will return to managing this illness. We will return to focusing on the unpredictable. We will return to medicine adjustments, conversations about DMTs, and doctor visits. We will return to MRIs and lesion counting, therapy and mobility aids.
Fortunately, some of us will also return to our support systems.
There’s much to be said and even more to learn about multiple sclerosis. After being misdiagnosed for about 10 years and then finally getting the diagnosis a year ago, I’m still actively learning about this illness. In a year’s time, I’ve gone through denial, deep depression, exacerbations and medicine changes, and now on the other end of all of that, acceptance and awareness. Equally, I now possess an immense amount of appreciation for my support team.
I now know, for sure, that I require a support system that includes my family, friends, doctors and organized programs. But in February 2019, I didn’t know I needed any of that.
Look, I’m not someone likes to rely on others. I created a life that required me to not be dependent on anyone. There’s been moments of need, where I needed help. But mostly, I am not a person that regularly asks for help. A real “do it myself-er.” That, my friends, can be destructive. Because when I needed people the most, I didn’t have the skills or the desire to ask for it.
But my family and friends continued to press through on my behalf. They continued to be here or there, even when I pushed them away. I tried (subconsciously) to be alone and disconnect.
But they would not go away.
They supported me in ways I will eternally be grateful for. I feel foolish about the way I acted in thinking I could get through all this myself. I’ve done some damage to my marriage, and I’ve negatively impacted my roles as a wife, mother, daughter, sister and friend.
While I’m dedicated to repairing these relationships, I must acknowledge that this has not been easy. Disease, illness and trauma impacts your life in totality. I am guilty of being on the outside, simplifying the plight of others and things I did not understand. Quite frankly, I didn’t even have the right to judge. Now I’m faced with this completely humbling experience, navigating COVID-19 and MS, and am hopeful people will extend me grace.
Nothing prepared me for what I am up against. But the support of my family and friends, that I sometimes don’t deserve, continually makes these adjustments easier. Even in knowing how blessed I am to have people that I can lean on throughout this battle, I don’t really know how ugly this MS thing is going to get. But as a brace for it, I’m so thankful to have a support system.
As we close this awareness month, it’s important to acknowledge the care providers, support team members, family and friends who dedicate their time, resources and efforts to helping us manage this illness. There’s no level of awareness that doesn’t include you, our support team. We all are affected by MS. We see you, and you’re appreciated.
For people “new” to supporting people “new” to receiving help, I offer these points:
- Things aren’t always what they seem
- When impacted in this way, we are forever changed
- Lean into the changes people are experiencing
- Adjust yourself, while we are adjusting to our new selves
- Recognize our sense of loss
- Accept that our roles in your and other people’s lives have and will consistently change
- Be patient but diligent in your efforts
- Be supportive instead of dismissive and aggressive
- Seek first to understand
- Help us stay connected
- Learn and educate
- Finally, take care of you
Playing the drums, which had been effortless and fluid, has become decidedly effortful and deliberate.