I was recently ghosted because my date found out I have Multiple Sclerosis.
This happens to be one of my top 5 MS fears and I will delve deeper into this topic as well as my personal experience in an upcoming post. But the triggering of this fear has motivated me to expand my writing on this platform and do more than just regale everyone with tales of gratefulness from my MS life. I created this blog as a pathway to deeper connections and communication about an invisible illness that affects so many. I want people to see what it is really like to live with MS. I need readers to understand the difference between facts and myths.
This week let’s talk about what MS looks like and the most likely reason why some random dude on a dating app decided to bail without ever having met me.
Myth: People with Multiple Sclerosis are in wheelchairs.
This statement surprises me every time I hear it, but I know many people believe it to be true. Decades of inaccurate representations on television have led to many myths about many diseases, including this one about people diagnosed with MS. When my neurologist sat me down to finally explain what was going on with me, I have to admit that it was the first image that popped into my head. When I started to cry it was because I was envisioning my new life in a wheelchair.
And let me be very clear; I do not feel that a life in a wheelchair is a death sentence or anything close to it. If this disease places me in a wheelchair at some point in my life, I will continue to write and be grateful and kick ass in a myriad of other ways. Just like MS or any other disease, a wheelchair does not define a person.
Although I am not someone with Multiple Sclerosis who currently needs any walking assistance, it is hard to tell from photos and social media. If you simply “glance” at my pages and then hear I have MS, you could completely assume I use a wheelchair. If you “glance” at the photos of me on dating apps, Instagram, and Facebook you do not see me climbing the stairs to my 2nd floor to get to my treadmill to run 4 miles every morning or taking my dog on long walks around my neighborhood or hiking up a mountain in South Africa. But this societal myth is so strong, a man I never met decided to “glance” and never look back. So let’s start setting the record straight.
- There are many people out there with MS who use a crutch or a cane, but never have movement issues that require a permanent wheelchair. I also trust in the many experts who believe this percentage is lessening with time as most studies of long-term disability were done before people used disease-modifying drugs. The drugs which have been released and approved in the last decade have significantly slowed progression in hundreds of thousands of people with MS. In another 10-15 years it is likely we will see less than one-third of those diagnosed using wheelchair assistance.
- Many people with SPMS (Secondary Progressive MS) do require the use of a wheelchair due to motor impairment. About 90% of those with RRMS will get SPMS within 25 years. Research has demonstrated the disease modifying therapies [DMTs] for relapsing forms of MS reduce the development of new areas of damage in the brain and slow the accumulation of disability. So the fact is, we currently don’t know exactly how long before those with RRMS will move into a more progressive phase and even then, many diagnosed with SPMS never require a wheelchair.
- A quick Google search will pull up hundreds of professional athletes and celebrities who are living with MS and still successfully doing what they love. I personally follow a ton of IG accounts that showcase runners and hikers with Multiple Sclerosis that are racing and competing in top form.
If you find out someone is diagnosed with MS, talk to them. Everyone with Multiple Sclerosis is completely different, experiencing a vast array of symptoms and distinct phases of this disease. At the very least, you might learn something and break a cycle of mythology that is long overdue to be broken.