I’m not fond of speaking about my personal life, less fond of speaking about my personal problems, and devastatingly shy about my personal health issues. I’ve been pretty quiet about it.
But this particular month of May is quite special to me so I’m forcing myself to talk about myself. This May marks ten years of chronic pain and illness. But wait! Don’t run away! This May marks a remarkably good year because this year is the year I got answers—I got diagnosed. And that is a pretty big deal and something to celebrate.
So, here’s a very short story for you because today is International Awareness Day (sounds important, right?). Let’s just call it a cautionary tale about misconceptions… and stereotypes… and keeping an open mind… and looking out for your own best interests. (If you’re not interested in my story—that’s cool—just please scroll down to the bottom and give that info down there a quick glance.)
Ten years ago this May, my daughter and I got a very nasty stomach bug. My poor little nubbin was just under two years old and while I was ill for mere hours, the very nasty stomach bug would just not leave her be. When we thought the worst days of it were over, she relapsed, her fever spiked, and she had the most terrifying series of complex febrile seizures. We feared the worst and expected her to be permanently affected as the seizures were fierce and the professionals were powerless to stop them. But, as quickly as she fell ill, she recovered.
As quickly as I recovered, I started to fall ill.
At the time, I was dealing with a few minor health issues that I felt started with my daughter’s birth. I had swelling and pain in my knees and I had developed carpal tunnel syndrome. I naturally assumed that what happened afterward was related. I’ll try to make this very long story short:
I got sick. All. The. Time. My joints began aching (screaming) one by one over the years. In the beginning, I just thought I was tired because I was a working mom; I thought I couldn’t concentrate because I quit smoking; I thought I was sick all the time because I was tired; I thought I was tired all the time because I was in pain all the time. See how this is going?
The doctors dealt with my constant infections. I searched the web for the autoimmune disease that must be doing this to me. The specialists drew enough blood to grow a few replicas of me. And I just continued to get worse.
There are a few things I want you to know:
- The first three years of my illness were three of my most successful years in business. I actually look back at those early years rather fondly.
- The following four years I struggled, struggled, struggled to keep my business going and my family living a “normal” life as my symptoms piled up and became more severe.
- The past three years everything just, fell, apart—business gone, constant pain, relocation, downsized, expectations changed.
And still, I had no answers.
And then, I did.
In January of this year, my rheumatologist (a fantastically knowledgeable lady) made a suggestion that put me on the defensive, angered me, and sent me out of her office wondering what in the world was my next option. She had the gall to suggest that I might have something called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. I was furious. I wasn’t some hypochondria-laden, lazy slob to be given a non-diagnosis meant to appease me. Fatigue! I haven’t spent tens of thousands of dollars in medical bills because I was TIRED! I’ve been patiently, tirelessly searching for answers on why my body was falling apart no matter how hard I worked it or pushed it or… I was there because of pain—not sleepiness!
A week went by before I finally did “the google”: chronic fatigue syndrome.
Then I apologized to my rheumatologist. Then I saw my family doctor. Then, just like that, I was diagnosed.
In this long decade of searching for the cause of our grief and pouring over information about every possibility that presented itself to me in an article or symptom checker, I never once read about Chronic Fatigue Syndrome. Not once. That’s not to say that Chronic Fatigue Syndrome didn’t show up every single time I did an online symptom checker, because it did. I can remember saying to my husband and the two of us having a good, hearty laugh “Ha! Look, I guess I’ve got Chronic Fatigue.” LOLs all over the place. What a joke.
Now, I must have had some really lousy doctors, right? Well, sure. Not all doctors are created equal and I’ve seen my share of disenfranchised folks. But they weren’t all lousy, just misinformed—by me mostly—and maybe uninformed. Uninformed about a disease with a silly name but a pretty clear diagnostic path. I never talked much about “fatigue”. It’s not really a word I would have used. I was concerned with the terrible, progressive joint pain and stiffness. So, it’s not really the doctors that are to blame—some of that’s on me. We’ve allowed ourselves to be tricked by the name of an illness—almost universally and at a great cost.
So that’s my tale about a serious disease with a silly name. I’ve got a long road ahead of me, but at least I’m on the right road. Maybe this tale will help you or someone you know take that road with me.
MAY 12 is International Awareness Day for Chronic Immunological and Neurological Diseases
The diseases, also known as neuro-immune diseases, include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM), among a long list of others. These acquired illnesses, involving dysregulation of both the immune system and the nervous system, often result in lifelong disease and disability and deserve a significantly higher research priority to identify and develop biomarkers of disease and more effective treatments for the millions who suffer.
If you or someone you know has been dealing with unexplained illness that just won’t go away, please read about ME/CFS at any of the links above. Ask your doctor to screen you. There are tools available to doctors through the CDC. They may not know about them or they may not be interested. If your doctor is not interested in talking to you about Chronic Fatigue Syndrome, FIND ANOTHER DOCTOR. PERIOD. END OF STORY.