I was 23 when I was diagnosed with multiple sclerosis. At the time, I was teaching high school PE, coaching, playing sports, and living a life I had worked ridiculously hard to build. I loved it. And then double vision showed up, followed by a diagnosis I hadn’t invited into my life.
There were conversations about symptoms, appointments, and what might happen next. Those conversations mattered. But I wish someone had asked me a completely different question: What happens when you don’t know who you are anymore?
Because I didn’t. And I didn’t even know how to say that out loud.
Could I please stop saying, “I’m fine”?
I became VERY good at those two words. They were quick, believable, and got me out of conversations I wasn’t ready to have. The trouble was, I wasn’t fine. I was frightened. There was anger, too. I felt I’d disappointed my parents and somehow failed at the life I’d only just begun.
But what would I have said if someone had asked me how I really was? I had no idea. Some days I could laugh and carry on as usual. Other days, I couldn’t picture my future at all. I wish someone had told me I didn’t owe them a tidy answer. “I don’t know” would have been an excellent place to start.
What if the old Patti wasn’t coming back?
THIS was the conversation nobody had with me.
Being a PE teacher wasn’t simply my job. I was an athlete, a coach, a teacher. Those weren’t labels I put on a business card; they were how I recognized myself. When MS eventually changed what I could do, I didn’t just lose a career I loved. I felt as though I’d lost Patti.
I spent years looking for her. Surely if I worked hard enough, she’d come back? Nope. And I was not particularly gracious about that discovery.
I wish someone had asked whether I might be allowed to create someone different instead. Not as a cheerful replacement for what I’d lost. I needed to grieve that loss. But I also needed to know I wasn’t required to spend the rest of my life searching for a woman who wasn’t coming back.
Could we talk about literally ANYTHING else?
I know people meant well. They asked about my symptoms, appointments and how I was feeling because they cared. But I didn’t always want MS to be the opening topic of every conversation.
I still liked sports. I had opinions and a sense of humour. And believe me, I was perfectly capable of talking about something ridiculous over coffee.
Imagine someone asking, “Do you want to talk about MS today, or shall we talk about something else?” I would have loved that. It would have reminded me that I was still a whole person, not the latest medical update.
And while we’re at it, I wish I’d known I could say, “I appreciate you asking, but not today.” No apology. No elaborate explanation. Just not today.
Would you believe me without making me explain everything?
Invisible symptoms are a peculiar thing. I could look fine while dealing with fatigue or balance difficulties that other people couldn’t see. And sometimes I spent energy I didn’t have trying to make my experience understandable to someone else.
I didn’t always need advice. I didn’t need a new solution or a reminder to stay positive. Occasionally, I needed someone to say, “I believe you.” Full stop.
What kind of help would actually help?
I was an independent, athletic young woman. Asking for help wasn’t high on my list of favourite activities. But neither was having someone assume they knew what I needed.
I wish we’d had more conversations about choice. Ask me whether I want assistance. Believe me if I say yes. Believe me if I say no. And please don’t give me a lecture if I change my mind five minutes later!
Could I be miserable without having to inspire anybody?
“Stay strong.” “Keep fighting.” “Be positive.” I understand the intention. But I was 23 and trying to make sense of a diagnosis I didn’t want. I wasn’t auditioning to become anybody’s motivational speaker.
Sometimes I was scared. Other times, I was angry. And sometimes I wanted to be left alone. Those weren’t failures of attitude. They were parts of my experience, and I wish I’d been allowed to have them without turning each one into a life lesson.
The conversation I’d have now
If I could sit down with 23-year-old Patti, I wouldn’t tell her everything would work out exactly as planned. It wouldn’t. I’d tell her she was going to lose things she loved, and she was allowed to be furious about that.
Then I’d tell her something she wouldn’t be ready to hear: stop searching for the old Patti. Not today, perhaps. But eventually. There is another woman you haven’t met yet, and YOU get a say in creating her.
Before MS, I believed I was a good person. Today, I believe I’m a GREAT person, and I genuinely love who I am. That didn’t happen because MS handed me a gift. It happened because I did a great deal of difficult, messy work.
That’s part of why I wrote MS doesn’t define ME: The Biography of a Polymath. Not because I have the answers, but because these are the conversations I wish someone had been willing to have with me.
MS does not define ME. I do.
