Become an expert on MS

I like to know how things work. I would describe myself as endlessly curious. And so, after my multiple sclerosis diagnosis, I was on a mission to learn everything I could about MS.

I wanted to know: What’s going on in my body? Why is it happening? What might I experience? What do I do now?

I get it – when you live with MS, you don’t necessarily want to think about it all the time. I’ll admit that there were some times in the early days when I needed to stop Googling. But I’m also really glad that I spent (and still do spend) the time to understand more about MS.

If you live with this shitty condition, I think it’s important to become an expert on it, in your own way.

Why?

• So you can feel comfortable talking about MS if people ask you questions and confident that you educated them on the condition.

• So you’re informed when going to your doctor’s appointments.
  • You’ll be able to ask smart, targeted questions and track what your doctor tells you.

• So you’re up to date on the latest research – which can help provide context, important information, and maybe even a little hope!
  • Visit sites like Multiple Sclerosis News Today. They share news on research findings and updates from major medical meetings, where new research is often shared. I personally like to know what’s going on in the industry because it’s interesting to see what researchers are focusing on when it comes to MS, and what new studies show us.
  • Also, companies with an approved product will sometimes publish additional data on the product after it’s approved – giving you more insight into the treatment.

• So you know your options when it comes to treatment.
  • Of course, listen to your doctor’s advice on treatment, but take the time to learn about the medications – what they do, how they work, the potential side effects, etc., so you can ask the doctor and feel comfortable in your eventual treatment decision.

• So you can learn about and try different ways to help relieve symptoms. For example, read about acupuncture, or yoga, or physical therapy and MS, to see if any of those activities might help you.

Most importantly: SO YOU CAN ADVOCATE FOR YOURSELF.

This is a big one: be informed so you can play an ACTIVE role in your care, including the decisions about your care, your needs, and your expectations.

Also, please remember: YOU ARE THE EXPERT ON YOU. You’re the only one who knows what it’s like to live in your body. Never forget that!