Why I Felt So Alone After My MS Diagnosis

Patient Expert

At the age of 21, I woke up one morning and felt a numbness in my toes. I remember thinking, “No big deal, I must have slept on them in a weird way.” It wasn’t until later that I realized you can’t really sleep on your toes in a weird way.

As the next few days passed, that numbness crept up my legs until it stopped at my waist. That’s when I called my doctor. I was never a sick child, so the only doctor I had was a PCP who barely knew me. My family’s medical history didn’t include anything out of the ordinary, aside from my father’s heart condition.

The doctor gave me a steroid shot and said I should call a neurologist if it didn’t help. My young brain immediately jumped to the conclusion that that doctor was an idiot. “Neurologists do nerve and brain stuff. My problem is in my legs,” I thought. I called my friends who had moms that were nurses, and the general consensus was this was definitely a slipped disc. For sure. As it turns out, phone diagnoses delivered by a middleman are generally not very accurate.

When the numbness didn’t go away, I made the appointment with the neuro, fully expecting him to tell me I needed to see a back specialist. I still thought seeing a neurologist was stupid. But I went, we talked, he told me I had to do a bunch of tests and even then I was still convinced that everyone in modern medicine was much dumber that I was, because why did I need an MRI of my brain and a spinal tap for a slipped disc? This is the naiveté of someone who has never been sick. Who didn’t Google symptoms because someone’s mom said it was a slipped disc. Who was still in the “invincible until proven not” phase of life.

The diagnosis that changed everything

It wasn’t until I was in the hospital bed, with the sterile instruments around me for the lumbar puncture that I started to think something might really be wrong, but no one had said anything could be really wrong, so everything must still be fine. When I went to the doctor’s office for the test results, there was no sugar-coating or beating around the bush.

“Hi, we got your test results in and it looks like you have multiple sclerosis.”

And that was the very moment my life changed forever. Sitting on that exam table, legs previously swinging off the side with the same enthusiasm as a 6-year old, I was delivered the ultimate blow to youth: chronic illness. I’d had no experience with serious sickness in general. I hadn’t lost anyone I was close to. I don’t even think I’d ever had the flu. I, literally, hadn’t even been stung by a bee. And just like that, that phase of my life was over. I left with binders of information about injectable medications, a number to call for a home nurse to set up my steroid infusions, and no one in the world I could ask for advice.

At this time, I knew multiple sclerosis was a thing that existed in the world, but that was the extent of my knowledge. I didn’t know what kind of disease it was, what part of the body it affected, if it killed you, or if it was contagious. I just knew it was bad and now I had it and, according to Google (who I was consulting regularly at this point), I was definitely going to crumble under my own weight one day, be wheelchair-bound, give up my dreams, and die old and lonely. (See, I told you I was naive.)

Finding acceptance and support

In 2006, when I received this diagnosis, there were internet forums but they were not as active and reliable as they are today. There weren’t really bloggers telling stories about living with MS that weren’t a total bummer. I didn’t have any family members who could tell me their experiences. I didn’t have any friends who could give me tips about moon face or ‘roid rage. And as a very entitled college student, I let this diagnosis change how I thought and interacted with the world. I made dramatic comments about how much I would suffer for the rest of my life and about how I wouldn’t be able to do anything I loved ever again. I was wildly uneducated and I didn’t have anyone to teach me. It took me a long time to learn how to teach myself about living with MS and to really, fully understand that my MS journey wouldn’t look like anyone else’s.

Looking back, as I finished up my last semester of college, I was ready to take on the world. I was a grown-up, I had an education, I’d studied abroad, I’d lived in dorms, I’d even lived on my own for a very unsuccessful six months. Now, I completely understand the health privilege I’d lived with until that point.

I grew up very quickly after my diagnosis. All of my invincibility had worn off and, although it took a long time, I eventually realized that MS wasn’t going to be the thing that ruined my life. That realization came after many hours spent on online forums and reading blogs. Creating friendships with other patients not only filled that void of having someone who understood, but it also was a knowledge resource I didn’t know I was missing.

While I started this journey essentially on my own, it will not end that same way. The friendships I have made from those early connections have lasted over 10 years now;these are friends I will continue to reach out to when I need someone. I feel lucky that there are people out there who understand.

See more helpful articles:

How to Find a New Neurologist

The Evolution of My MS

Double Dose of Chronic Illness: Living With Multiple Conditions