Seventeen years ago, I received a diagnosis of multiple sclerosis (MS). For the most part, I feel like I’m pretty good at having MS. It’s a tough job and the pay is lousy, but I manage what needs to be managed. I get on with it, and I share my experiences on my blog, Tripping On Air.
I wasn’t always such a boss with MS, though. When I was first diagnosed, I was terrified. I was just starting out in life, and my diagnosis felt like my whole future was thrown off.
The first-year post-diagnosis can be one of the hardest of your life. I learned a lot during that time, and you will too.
Here are six things I learned in the first year after my diagnosis.
1. MS is nobody’s fault
It’s human nature to want to figure out why things happen. We can’t help it.
My first MS symptom was stabbing eye pain that was later diagnosed as optic neuritis. It appeared a week after I’d spent a Halloween night drinking too much wine with my girlfriends, casting spells, and performing amateur seances.
For a long time, I’d convinced myself that red wine and demons had somehow invited MS into my life. We don’t know exactly what causes MS, but it’s safe to say it’s not witchcraft.
You didn’t get MS from staying up late or not hitting the gym hard enough. You didn’t get MS because you forget to floss or you eat candy for breakfast. MS is not the result of whatever bad habit you’re beating yourself up over. MS happens and it’s not your fault.
2. I’m tougher than I thought
The first treatment I was prescribed was an injection — an injection I’d have to give myself. My only thought was no, over and over. I couldn’t imagine that I’d be able to withstand injections every other day, let alone give them to myself.
My mom gave me my needles for the first month. But one day, I decided I wanted my independence back.
Firing an auto-injector into my leg for the first time was scary, but I did it. And the next time I did it, it was easier. My injections kept getting easier, until giving myself a needle finally became no big deal.
3. On the other hand, meltdowns are OK
Even as I was finding out I could do hard things, I would periodically find myself crumpled up on the bathroom floor, crying my eyes out. I put a lot of pressure on myself to put on a brave face for others, but it’s normal to freak out.
It’s healthy to grieve what you’re going through. But if you’re struggling, it’s a good idea to ask for help. Talk to your doctor to receive recommendations for mental health professionals who can help you.
4. Everyone’s an expert
After my diagnosis, it suddenly seemed as though every random person who learned I had MS had something to say. They would tell me about their sister’s best friend’s mother’s boss who had MS, but was cured with some miracle diet, exotic supplement, or lifestyle change.
The constant unsolicited advice was well-intended, but uninformed. Remember, your treatment decisions are between you and your doctor. If it sounds too good to be true, it probably is.
5. The importance of a tribe
After my diagnosis, I reached out to people who were going through the same kinds of things I was at the time. This was before it was easy to find groups online, but I was able to connect with others like myself through the National MS Society and through mutual friends. I formed bonds with young women with MS who were at the same life stage as me, trying to figure out things like dating and starting careers.
Seventeen years later, I’m still close with these women. I know I can call or text them anytime I need to vent or share information, and they will get it the way nobody else can. Being seen is invaluable, and by helping each other, you can help yourself.
6. Not everything is about MS
There are days when I feel like I’m never not thinking about MS. On these days, I have to remind myself that I’m more than my diagnosis — way more.
Adjusting to a new normal and a new way of how you thought your life was going to look can be overwhelming, but you’re still you. MS is a problem that you need to deal with, so look after your MS. But always remember you are not your MS.
During my first year with MS, I learned a lot about what it means to live with chronic illness. I also learned a lot about myself. I’m stronger than I ever thought possible. In the years since my diagnosis, I’ve learned that MS can make life difficult, but a difficult life doesn’t have to be a sad life.
Ardra Shephard is the influential Canadian blogger behind the award-winning blog Tripping On Air — the irreverent insider scoop about her life with multiple sclerosis. Ardra is a script consultant for AMI’s television series about dating and disability, “There’s Something You Should Know,” and has been featured on Sickboy Podcast. Ardra has contributed to msconnection.org, The Mighty, xojane, Yahoo Lifestyle, and others. In 2019, she was the keynote speaker at the MS Foundation of the Cayman Islands. Follow her on Instagram, Facebook, or hashtag #babeswithmobilityaids to be inspired by people working to change perceptions of what it looks like to live with a disability.