The Evolution of My MS

Patient Expert

In September 2006, I was in my final semester of college, ready to graduate and take on the world. I had plans to be a graphic designer -- someone who would make art that made people feel something. The world was my oyster, and I planned to take it all in. What I didn’t know was that the universe had plans of its own for me -- in the form of Multiple Sclerosis.

Ten years ago, as a bright-eyed 21-year-old, I thought that a MS diagnosis was the worst thing that could ever happen to me or to anyone else. Oh, how much can change in 10 yearsMy personal education

Before I was diagnosed, I didn’t know a single soul with MS. In fact, I didn’t know anything about MS, at all, and during my diagnosis got it confused with three other diseases. I left my doctor’s office not knowing if this was something that would kill me. I spent the next few months going through various tests and Googling like crazy to try to understand what my future held. The outlook (according to the internet) was not very good.

According to the stories I read online, I’d be in a wheelchair within 10 years, my future spouse was sure to resent me, and I would probably need someone to help me with daily tasks before I was the age of 50. At 21, the prospect of this sort of future was grim, and as I slowly began to understand what it looked like, I felt increasingly isolated: as far as I could tell, there wasn’t anyone else in their twenties talking about living with MS.

I started to tell my story through an internet newsletter called MSunderstood. When I look back on the information (and misinformation) that I found on the internet 10 years ago, I’m saddened and frustrated for my younger self. There was so much negativity out there; no one was sharing stories of triumph. I didn’t know that it was possible to lead a happy and healthy life with MS. Ten years later, I’ve met so many patients who are accomplishing amazing things despite their diagnosis and limitations.

Evolution of medication

A decade ago my options for medication were limited to injectables. I was terrified of needles and had never self-injected before. The whole thing was overwhelming. My doctor told me that I had to pick my own medication and that without medication I’d have to resign myself to a future of devastating disability.

Now, in 2016, we have a slew of medication choices. Various oral medications have been released over the last few years, with many more coming down the pipeline. We have infusions that have changed the disease trajectory for thousands of patients. We’re even seeing, in clinical trials, injections that might be limited to once every six months. I’ve also been fortunate enough to find doctors who have supported my choices to not take medications.

With new studies and open minds, doctors have been able to see valuable treatments outside of medication. It has been amazing to see how far we’ve come in terms of treatment options in one short decade.

The face of MS has changed

As the explosive availability of the internet and social networks has vastly increased the ability to connect patients, I’ve seen a sea change in the demographic of those who are living with MS. At 21, I felt like I was the youngest person to ever receive this diagnosis, and with few ways to find other patients my age, I had to navigate it on my own. I didn’t know anyone else in college, or anyone else starting a career, who had MS.

Today it seems as though younger people are being diagnosed more often. I can’t say for certain if there are more people being diagnosed at younger ages, or if there is just a sounding board now for everyone to connect. As a chronic illness patient, I have seen the internet become a game-changer in terms of offering support and companionship for disease communities, and I wish I could travel back in time and let 21-year-old me know that I would eventually make life-altering friendships with other MS patients.

How I’ve changed

As a scared, newly diagnosed patient, I really believed my life was over and that my chances for true happiness had vanished. I was so uneducated. I never conceived that I would take my MS diagnosis and my subsequent IBD diagnosis and turn both into a passion for advocacy and, eventually, a career.

So … happy anniversary to my MS. This journey -- which isn't over yet -- has been a great reminder of how much can change in such a short period of time.

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Jackie is an ulcerative colitis patient and the founder and Executive Director of Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears. Jackie has worked hard to become a strong voice in the patient advocacy community, and pays it forward as Social Ambassador of the IBDHealthCentral Facebook page.