My MS assumption: I wouldn’t live past 40 

“You don’t look like you have MS.”  

That’s been a common reaction by people when they find out that I do. 

“You don’t look 46.” 

That’s been a less common (but still frequent one, thank you) reaction by people when they find out that I am. 

Despite appearances and assumptions around what either look like, both are true. But looking back, many of the assumptions I had about MS, especially early on, weren’t true at all.  

In a way, I’m lucky. I can pass for late 30s or earlier 40s sometimes. And I can get away with people not knowing something about me that could change the way they treat me. Eventually, when someone knows me long enough, the truth comes out.  

When I was diagnosed with multiple sclerosis over 25 years ago, I didn’t know much other than what the doctor told me:  

• There was no cure, only a few treatments that may or may not work. 
• I should live life normally until I can’t. 
• I shouldn’t have kids.
• I should expect to get worse over time.  

I was 19 at the start of my first relapse and 20 when I was given these orders. At the time, these felt like facts. Looking back, they were assumptions, and many of them were wrong.  

My core beliefs at age 20

The way I processed this information led to three core beliefs: 

1. I won’t live past 40.  
2. I HAVE to be ok, ALL THE TIME (despite outcome 1).
3. I will always be alone. 

All three beliefs were based on assumptions I had about MS. I continue to challenge them to this day. In fact, discovering Overcoming MS for myself a couple years ago provided 7 more pillars’ worth of challenges to these assumptions all at once! 

The assumptions those beliefs were rooted in weren’t unique to me.  As my experiences have altered my beliefs about MS and myself, I find myself also trying to explain MS to others.  

“I won’t live past 40”

I held this unarticulated fear for nearly two decades. I was waiting for the inevitable to happen whether it was losing mobility or control of bladder function or cognition ultimately leading to my decline. Even if I did make it to 40, I thought it wouldn’t be much of a life. 

I’ll admit, I’ve had issues with 2 out of 3 of these but they haven’t been fatal.  

I have fallen… a lot. At the advice of a PT, I’ve now traded in my Old Skool VANS for responsible trainers so my feet recover their steps more quickly. And I have worked on my tuck and roll landing to prevent damage to my iPhone. Outside of scrapes, embarrassment and, ok, one broken leg one time, I get around pretty well. I’m lucky so far. 

When I feel a coughing fit coming on, I prefer to be seated or at least standing and I’m no longer brave enough to walk and sneeze at the same time because of unintended consequences. But, a lot of women in their 40s are the same. From bladder to body temperature, I sometimes ask myself is this MS or just aging? 

I underwent cognitive tests two years ago because I got really concerned after I was struggling at work. I was fine, just bored and too hard on myself… and it turns out, unaware of undiagnosed ADHD (that has since been diagnosed).  

I now know that people with MS can and do live long, full lives. Yes, MS has changed my life. But, I’m still here. And I can still do things! That assumption, that people with MS can’t do normal things is the one I’m here to challenge now. Reader with MS, if you don’t mind, I’ll speak for all of us. We can still do things and we’ll let you know if we can’t or don’t want to. 

I HAVE to be ok, ALL THE TIME

For years, I felt I had something to prove. 

Work too much? Absolutely. I did 80 hours a week at some points. 

Stay out all night? Yup. I was in for the next round. 

Show up at x event? Of course. I’m not a flake. 

Saying I was tired or not feeling well? Not an option.  

I had to push through. If people knew that I wasn’t feeling well, they would stop asking me to do things or approach me with kid gloves. If I used MS as an “excuse” once, I always would. 

None of that is true though. And if people stopped asking me to do things after I couldn’t once, that was something about their behavior that  I could not or cannot control.  

Now, I say no sometimes. I admit when I’m feeling fatigued or that walking isn’t easy for me on a given day. I don’t have to be ok all the time and I don’t have to say I am. I don’t have to make other people feel better about my illness.  

Defying this belief has helped me communicate better and has allowed them to gain a better understanding of me and how I’m feeling. And when I am doing fine, they are happy to know that too. 

People will make assumptions about those living with MS but for me, when I talk about it, I feel empowered because I can change the narrative about me and hopefully others too.  

I will always be alone.

Anyone who has dated as an adult, especially online, probably has stories to tell about how wonderful or abysmal it can be. When it comes to creating a dating profile, single parents wonder if they should reveal they have kids. People over 50 wonder if they can get away with saying they are 49. And I wonder if I need to mention that I have MS.  

I made an assumption that having MS meant no one will be interested in me. But, I have seen so many people in relationships as the person with MS or partner of the person with MS and I now know that this isn’t true. 

At times though, this belief has been so deeply held that it’s made me hate MS or just hate myself for having it. I have been afraid to reveal it which made it a secret and ultimately a source of shame. Yes, I was ashamed about having MS. 

I still don’t put it in my profile and don’t feel obligated to talk about it on a first date but I also don’t feel I have to hide it. It comes up when it does. 

One person I told about my MS arrived at the subsequent date excited because he had done “research”. He then explained MS to me for 20 minutes and concluded that we should not have kids! Wow. It was our second date. I had to agree and went one step further and said we should not go out again. I suspect we would have run into other issues.  

I don’t have kids. Based on information at my time of diagnosis, I decided I wouldn’t because I thought I could pass MS on to them. I now understand that while there may be a slightly increased risk if a parent has MS, the overall risk is still low. Had I been diagnosed today, I may have thought differently but that time has passed. It was another assumption I had. But I definitely don’t need to date someone who still carries that assumption. And I know that MS doesn’t mean I will always be alone. 

You don’t look like you have MS

Sometimes the “you don’t look like you have MS” statement is accompanied with a version of “at least it isn’t affecting you,” meaning MS doesn’t impact me. I try not to get defensive or prove it is impacting me. I don’t always want to share details about my personal life. I just remind myself that they just don’t know. They think MS is one thing and it is so many things. I tell them, yeah, it affects people differently. The irony with it being invisible is that sometimes I can’t see out of one eye making it half invisible to me too! 

I perform standup comedy. Just before I turned 40, I stepped on stage. I didn’t think people would want to hear me talk about MS though. And didn’t think anyone would find it funny. I hid it. That’s “invisible privilege” I suppose. I write about my experiences though so skipping that part of my life was tough. I write jokes about it now and share them on stage. People even laugh. It can create connection, give people a new way of looking at their own disease and is another way of challenging assumptions about it. 

My new beliefs?

I’ll live. 

I can tell someone when I’m not feeling well or need to shift plans 

If MS is why someone doesn’t want to date me, I don’t want to date them anyway. 

Challenging my own assumptions and refining my beliefs has been an important practice for me while living with MS. I’d love to hear from you if you want to talk about your own too.

Rabiah shared her story for MS Awareness week 2026. If you would like to share your story or if you have a message for Rabiah please email [email protected]. To find out more about MS Awareness week click here.