MS advocate and real estate investor Tamiko Ryan talks about the frustrations of getting proper treatments and shares strategies to help you get the support you need to manage MS and thrive.
Multiple sclerosis (MS) is a neurological condition in which your immune system attacks the protective layer around your nerve fibers. MS can cause muscle weakness, motor symptoms, vision changes, and fatigue, among many other symptoms.
There isn’t a specific test for MS. It’s a diagnosis of exclusion, which means a doctor might useTrusted Source various tests, such as an MRI scan and a lumbar puncture, to arrive at a diagnosis. Almost 1 million people in the United States currently live with the condition, according to the National MS Society.
Treatment for MS is lifelong and is often costly. A 2022 study found that the average per-person annual cost for MS was $65,612. Retail prescription medication accounted for more than half of that cost.
For many people living with MS, the financial cost can be a significant burden. It’s just one of many potential barriers to treatment. Resources for support are available but can often be hard to find without guidance.
Tamiko Ryan received her MS diagnosis in 2005. Since then, she has used her voice to advocate for herself and others with the condition.
Tamiko spoke to Healthline about her views on self-advocacy, the barriers to treatment, and how you can find support while living with MS.
*The interview has been slightly edited for language and brevity.
Do you think self-advocacy is important? If so, why?
I started volunteering soon after my diagnosis because I wanted to know more. I needed to know what this disease is going to do, how it impacts my life, and also how I can impact other people. So I started volunteering for the National MS Society in 2006.
I’ve been to Capitol Hill, and I’ve met my state representatives. Over the years I’ve done multiple things.
But over the course of time with MS, I discovered that it’s a journey. You have to speak up for yourself. You have to know yourself. You have to be willing to be open. And that is a difficult point for a lot of people with MS.
Openness is very difficult. When you get a diagnosis of a chronic illness, it’s a shock to the system and people respond differently. Being open about your illness doesn’t mean you have to tell everything. But you need to be a little open so people know how to help you and where that help comes from.
There are a lot of agencies, a lot of programs that a lot of patients with MS could benefit from. But how will that information get to you if you’re not open about your illness? So the struggle is balancing openness and wanting to be private at the same time.
One of the things I love about advocacy is that not only do I advocate for people with laws, but I also advocate for people by offering my experience through support groups, through friends. I love doing speaking engagements. When it’s time for selecting your insurance at work, I will set up a table so that people can learn about what MS is.
So I think advocacy is more than just about pushing for laws. It’s about pushing for individuals to say, “Hey, I have this, and I need help,” because I was once there.
