Why I'm Advocating for Better Medical Care on ME Awareness Day

May 12th is the day that has been dedicated as Myalgic Encephalomyelitis (ME) Awareness Day around the world. For me, and millions of others, every day is ME day.

Myalgic encephalomyelitis is a multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems. With ME there is no day off. No reprieve, not even a moment of silence. It speaks loud and clear. Every day comes with sheer exhaustion, pain, cognitive challenges and more. There’s not a day; it’s every day.

When I first got ME, I thought that would be the hard part. I’ve since learned that’s just phase one of this debilitating disease. I quickly realized that I also had to self-educate myself on the science behind ME. It only took one visit to my medical provider to realize I had to educate my doctors on what ME is. If I didn’t, I was prescribed medicines that were harmful to me or treatment regimens were advocated that exacerbated my exhaustion and pain. So, I researched, analyzed studies and talked to my fellow ME warriors. Did I mention science is not my thing? However, I continue to invest time doing this weekly because I don’t have a choice – this is my life we are gambling with. Despite being highly educated, well spoken and armed with ME facts, I was still quickly dismissed at every appointment.

A couple years in, I’ve now learned that phase two isn’t so bad… compared to phase three. For many of us, ME comes with “friends.” You don’t always just have ME. Your list of conditions may quickly start to add up. As if ME wasn’t debilitating enough.

Once you start adding in these new conditions, you then have to learn about them and how they interplay with ME. The layers of complexity here quickly begin to add up. Don’t forget – science is not my thing. I got an F in physics in college!

Once again, I quickly learned I can’t simply rely on my doctors to tell me about the interplay between my new issues and ME. If I dare ask my specialists (I’ve long since stopped going to a primary doctor for my care), I quickly get shrugged off. Like it’s not real. Yet it’s so real to me. Every day, every moment.

So, when these “friends” come along I once again go home to Google, ask my fellow ME warriors and then I try to put it all together into something I can work with. Something I can explain to my doctor. Not an easy task when you have concentration issues and memory loss. And don’t forget, I’m exhausted by the ME. But research I must or a doctor may unknowingly lead me down a path that could cause me to crash and burn.

In short, being sick with a debilitating disease like ME isn’t just physically and mentally debilitating. It’s complex and research-heavy when all you want to do is rest. But what little quality of life you have left may very well depend on your own medical research in such situations.

As a patient should I know more about my illness than my doctor? No. Should I have to educate them on it? No. Should I be dismissed when I try? No. Do I deserve more from my medical providers? Yes!

So where does that leave me? I’m still exhausted, but my research has paid off. On my own I found a medicine that is helping me. It then took calling countless doctors before I found one that would consider prescribing it to me.

Since then several new (and scary) issues have cropped up. I’m still overwhelmed as each new one arises. The idea of starting the research process all over again is unbearable to even think about. But I must, I must learn and advocate for myself to get proper medical care or I won’t get it.

Why is this acceptable? Why am I paying for medical insurance when I am the one doing all the work?

Why? Because I value my life more than anything. I worked hard for this life and I won’t just give it away. Doctors may dismiss ME, and me, but I will not let them off that easily. I will continue to research, push and fight for the medical care I deserve. The care I need to live the life I’ve worked hard for and deserve. I am worth it.

While it will take a while to turn the medical community around, through my endless research I do see that it is happening. That brings me so much hope. I see #MEAction fiercely advocating for us all. I see Solve ME/CFS working steadfastly to make this disease understood, diagnosable and treatable. I see Ron Davis and the Open Medicine Foundation vigorously researching for a cure. I see Jen Brea bravely sharing her life with ME with the world through her movie “Unrest,” winning countless awards and raising global awareness. That to name just a few! They are relentless and I am eternally thankful to them all. They are fighting for my life; I’m not about to give up on them or me. I’m in it to win it!

On May 12th I will join the #MillionsMissing to raise awareness of ME. May 12th is just one ME day of my 364 others this year, but it’s a day that has meaning far beyond the 24 hours it contains. It’s a day that represents hope, a joining of forces, all fighting for a better quality of life. Fighting for our lives, for our health. Because we deserve it!