10 Lessons I Learned From Being Diagnosed With Stiff-Person Syndrome


1. No matter how much medical knowledge you have or think you have, there will always be a disease you’ve never heard of. 

After six years of illness, I remember be shocked when my doctor told me she thought I had stiff-person syndrome. Because let me tell you, I had done my research over the years. I knew about plenty of rare diseases. But I had definitely never heard of that one.

2. Doctors are human.

As much as we like to think they’re some sort of magical database of knowledge, they’re not. And when you have a rare disease, they often have to Google it in front of you.

3. You should probably have a short version of an explanation prepared for when people ask about your disease. Because they will, and sometimes it’s hard to explain.

4. With rare diseases, it is rare to be diagnosed in a timely manner

for obvious reasons. The doctors you’re first seeing might not even know this disease exists. And maybe you’ve even heard, “It’s rare so you probably don’t have it.”

5. You learn to appreciate the people who stick by you.

Going for years and years of barely being able to leave the house much, so many friendships can get lost. But those ones who stay, those are the keepers.

6. Compassion.

You learn compassion and you gain wisdom. Because you’ve gone through an ordeal. Maybe it was years of doctors not believing you. Maybe it was friends slowly disappearing. Maybe it was your family being unsupportive. Now you have learned to believe in others. You’ve learned good friends are worth more than money can ever buy. You’ve learned you want to be there for others whose families might not be
there for them. Because family isn’t always blood.

7. The importance of advocacy.

Our disease are under-researched and underfunded, and that is part of the reason we wait so long for a diagnosis.

8. Communicating with someone who also has your disease is like finding a long lost brother or sister.

And the bonds you form will be unbreakable.

9. Sometimes, you learn to be somewhat OK with being an experiment.

Your disease is rare, and it might be your doctors first time treating it, so they are learning along with you. They are doing what they can and trying treatments they think will work on you, and while some of those treatments may help, some of them will not.

10. “When you hear hoofbeats, think horses, not zebras.” Well, sometimes it’s a zebra, and sometimes that zebra is you.

And you learn to make noise, so other zebras are heard also.

Follow this journey on Love, Light and Insulin.

We want to hear your story. Become a Mighty contributor here.


Find this story helpful? Share it with someone you care about.


Related to Stiff-person Syndrome

Woman brushing her teeth in bathroom

When Pain Makes Brushing Your Teeth a Challenge

There is one task we all should do in the morning after we eat breakfast and again in the evening before we go to sleep. It is a simple task and its importance is instilled in us from a young age. Can you guess it? Yes, it’s brushing your teeth. While it is very easy, [...]
Woman sleeping on a bed in hospital ward

What Goes Through Your Mind During a Near-Death Experience? Probably Not What You Think.

Near death experiences (NDEs)… This term probably paints a picture of a panicked individual, maybe conscious, maybe not, or maybe somewhere in between. Panicking is a natural physiological response to adrenaline, and some experience a generalized panic at least for a second. You’d probably think everyone stuck between life and death thinks about all the [...]
Long empty asphalt road towards sunset sun. Wide perspective, conceptual way

Why My New Year's Resolution Will Help Others With Stiff Person Syndrome

For my New Year’s resolution, I am resolving to finish my senior collegiate research project on the journeys that patients with my rare disease, stiff person syndrome (SPS), go through to get their diagnosis. This comprehensive exploration of the diagnostic and treatment process from a psychosocial perspective has the ability to not only serve as [...]
People in scrubs walking down a hallway.

The 2 Types of Doctors You Need to Know About If You Have a Rare Condition

Like many patients with chronic and rare diseases, I am forced to do thorough research to find specialists capable of handling my complex case. I research, make some phone calls, research some more, and depending on how the search goes, I eventually make an appointment with the specialist. I’m often told, “Oh yes, Dr. Smith knows [...]