LEMS Ambassadors are compensated by Catalyst Pharmaceuticals, Inc. for the time they spend discussing their experiences with LEMS.
Getting diagnosed with a rare, incurable illness can bring up a lot of different emotions, as you can imagine. It can be scary and isolating, but finally having a name for the symptoms you’ve been suffering from can also be a huge relief. It can even feel empowering! I was diagnosed with LEMS in 2019, and since then, my perspective on some issues has shifted for the better.
Here are four things I’ve learned about living with LEMS, then and now:
1. You are not alone.
While I was certainly relieved to learn that I have a disease with a name, it was still difficult news to process. I felt so isolated—not only did I have a medical condition, but a rare one at that. I felt so alone and disconnected from the world around me.
I’ve since learned that I’m actually not alone. My family and friends have helped me through this journey, and I’ve also connected with other LEMS and rare disease patients. It’s easy to feel lost and hopeless upon a diagnosis, but with time, I’ve learned to see things in a more hopeful perspective by relating to others who share my struggles.
2. Treatment is worth it.
Learning about treatment options when you are first diagnosed can be stressful and even overwhelming. There is a lot of information to take in! When I was first learning about treatments, what concerned me the most were the potential side effects. I knew how serious committing to a treatment would be, so I wanted to make sure, with my doctor, that any potential risks were outweighed by the benefits.
Since I’ve started treatment, I no longer have that concern. My LEMS symptoms have been managed, which has outweighed the risk of any potential side effects. I have more balance again, I don’t fall like I did before, and I’ve been able to cook my own meals. It’s so important to talk to your healthcare team about treatment options available to you.
3. You may lose some independence, but you’ll win other things.
Coming to terms with my LEMS diagnosis also meant coming to terms with certain difficult truths. My energy and mobility would change, and I would have to soon retire from my job. I remember feeling robbed of my independence, which was very important to me.
Now, I have adapted to my limitations and work my way around them. I have two motorized wheelchairs (one big and one more portable) and a walker, so depending on what I have to do and where my energy is that day, I have options to keep me mobile. And while it was difficult to retire earlier than I wanted, I have used my new free time
wisely and creatively. For example, I have recently gotten into cooking, thanks to some Internet chefs posting delicious recipes and videos online.
4. Don’t worry about people’s perception of you.
When I started using a walker, I felt very self-conscious and would often avoid eye contact with others. I also feared that friends and loved ones would stop asking me to do things with them, since it would now take extra effort to accommodate my walking aids.
But that was just me overthinking the situation. I wish I hadn’t wasted so much time and energy on fearing what people’s perceptions of me would be once I got my diagnosis. I’ve learned to accept my reality and live my life as is. I no longer avoid eye contact or conversations with people when I’m on my motorized wheelchair or using a walker.
In fact, I now usually take my Chihuahua, Penny, out with me, which often leads to conversations with strangers!
What was once new, unfamiliar, and uncomfortable to me is now my new normal. Change in your routine and habits after receiving a diagnosis is inevitable, but the best way to overcome that change is with time, a positive outlook, and at least for me—some homemade stew.
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