For me, the hardest thing about living with Multiple Sclerosis is figuring out if/when/how to tell someone that I have it.
Usually I don't say anything, because I'm fine. No pain, no symptoms or disabilities. I couldn't get handicapped parking if I wanted it.
My MS is no big deal.
How Quickly We Forget
Well, it's no big deal now. When I was diagnosed in July of 2002, lying in a hospital bed and hooked up to IV steroids, it was a nightmare of epic proportions. It scared the shit out of me. And my husband, Jeff. And my family, and the few friends in whom I confided.
I eventually recovered from that episode, and then got so much better that I forgot how sad and confusing my life was in that first post-diagnosis year.
Those early days came flooding back when I met a 28-year-old woman (let's call her "Maya") who was newly-diagnosed with MS. We shared diagnosis stories, and I found myself assuring her that:
- Your body gets used to the medication and you stop getting giant red welts at the injection site. Until then, Benadryl cream helps.
- My hair also fell out after I was hospitalized. It all grew back.
- You won't become instantly paralyzed if you dip your toe in a hot tub, take a hot shower or do a hard work out. Even if you feel some symptoms, they will most likely go away when you cool down.
- The scariest thing you can do is hang around online forums, because only sick people have enough time to be there. The rest of us are busy living our lives.
Maya had a great perspective relative to that last point, about all of the scary information available online. Through a support group, she met a lawyer in NYC who works 12 hour days in 4" heels. This lawyer said*, "Organizations like the Multiple Sclerosis Society are in the fund raising business. Who would donate money based on the story of someone who's totally fine? They're going to promote the stories of brave people in wheelchairs, not people like me."
Sure, I think I'm lucky, but also I suspect I'm pretty average. You just don't hear about the people like us who aren't struggling, because there's not as much story to tell!
*I'm totally paraphrasing! And the MS Society is AWESOME, everyone should give them money!
Sharing is Good
After lunch with my new friend, I kept thinking about how, back when I was in Maya's shoes, it was impossible for me to imagine feeling as well as I do now. I think I hoped I would be better, but mostly I was afraid.
The best thing that happened to me was a conversation with a woman who had lived with MS for a few years and said flatly, "Not everyone with MS winds up in a wheelchair and on disability. We have jobs, we go on hikes, go grocery shopping, and live full, happy lives."**
Even though her experience had no bearing on the progression of my disease, on bad days it kept me going to know that a fully able-bodied life was possible for someone with MS.
I was grateful to be able to return the cosmic favor, and say to someone who was struggling, "REALLY it's possible that you will be okay, because I'm okay, and I know other people who are also fine. Just hang in there!"
It seemed to help Maya to hear this, just like it helped me eight years ago.
That in turn made me realize that I'm finally ready to tell my story. Perhaps it will help someone else who is newly diagnosed with MS, surfing the internet for information and getting terrorized by all of the sad -- and yes, all too real -- stories of people who suffer horribly with MS.
If that's how you found this post, and your heart is racing from reading vivid descriptions of just how grim your symptoms can get (that stuff still gives me sweaty palms and hives!) I want you to know, there are a lot of ways your "journey with MS" can work out, including having it be Not A Big Deal.
There aren't any guarantees, but there are plenty of possibilities. Be brave enough to hope that you're one of the "lucky" ones, too.
**No disrespect meant to people in wheelchairs and on disability, who live full, complete lives, including grocery shopping and jobs -- but lets be real, the first thing that everyone thinks when they hear "You have MS," is "Shit, I'm going to wind up in a wheelchair!" No one wants to be disabled.
My Diagnosis Event
Here's how I was diagnosed: