CFS/ME, Fibromyalgia and all those other mysterious chronic illnesses — will the answers come from the community?

In 2015, a dear friend of mine passed away from complications of rheumatoid arthritis. Linda Wolfe was also a volunteer at the Yuma International Airport Military Comfort Center, and we both started working there when they opened in 2010.

She’d worked for New York travel agents most of her life, was born and raised in Brooklyn. Like so many others, including myself, she came Arizona to heal.

One of the reasons I mention Linda is that she was one of the volunteers with the most hours making cookies and coffee for military families and retirees passing through our little airport. In five years, she’d clocked over 1500 hours, which was amazing to me, considering the state of her health. Her hands and feet were mangled by the disease, yet she was still able to function, and function well. I’m not sure of her age. It wasn’t particularly important, but I knew she was on Medicare, so she was at least 65.

Another reason I mention her is that meeting her was the first time I’d known anyone with rheumatoid arthritis. I’d been diagnosed with it myself in 1984, and after leaving Michigan’s cold, wet climate in 1986 I’d almost forgotten about it. I thought the heat and dry air of Southern Arizona might have healed it, or else I had a mild case. I’d had none of the severe problems Linda experienced, and though it took a year or two for the realization to strike, I did eventually consult a rheumatologist. He did some tests, and confirmed what I suspected — that I did not have RA. What he believed was that I actually had fibromyalgia.

So I had another year or two before I realized that fibromyalgia was not the whole story. That’s because since about 2000, most years in the late winter or early spring, I’d be sick with vague and variable symptoms for a month, or more. The first few years I’d see a doctor and get antibiotics for a stubborn UTI or kidney infection, but then it wasn’t the same every year. I started taking cranberry supplements, which seemed to help. One or two years in there, what I’d begun to think of as “the mystery illness” didn’t show up, so I thought it had gone away, until the stress of working at a small radio station along with several volunteer positions meant I was driving over 1500 miles a month myself, traveling all over the state with others driving, and having very little down time. By the spring of 2013, I was so ill I could hardly function. When I finally got to a doctor and was diagnosed with interstitial cystitis on top of the fibromyalgia, it was almost a relief.

This isn’t about me, though. My friend, Linda had a nephew living in Virginia whose wife, Elena DeRosa, was (and still is) a writer. Elena had written a novel Linda was anxious to read, because it was set in Brooklyn and Linda said it was about people she actually knew in real life. As it was published in ebook format and Linda had no computer, there was no way she could read it. So I downloaded the book from Smashwords and printed it out for Linda. The book itself, entitled Fractured Facade, was about elder abuse. As I was at the time Chair for the Regional Council on Aging for Western Arizona, the book was right up my alley and I became Facebook friends with Elena.

So that’s how I heard about an amazing young woman by the name of Marie Aprile. She’s Elena’s daughter, and was an up-and-coming TV news director until chronic disease began to take its toll. I’ll let her tell her own story:

“ [O]ne thing I am struggling with is accepting that my dream since 8th grade is never going to happen. There is massive heartbreak that is associated with chronic illness made even heavier by being affected in the prime of your life. For me, it is extremely bittersweet as I watch my peers move on to bigger markets–I couldn’t be happier and proud of them, but I wish I could go too.
This year marks 4 years directing, and I expected to start that transition into a larger market by 5. But then I had surgery, and fibromyalgia hit harder, and chronic daily migraines stole my memory and my vision as I watched my dream get smaller and smaller in the distance.
That is why I am so passionate about the chronic illness community-you guys keep me pushing, fighting, and holding on. Last night ended on a low note for me, but today started on the highest.
Today, I had the honor of showing this group of disabled adults from Goodwill around the station. I was given the opportunity to tell my story and remind them that our disabilities give us a wisdom about life that sets us apart in a good way, that our lives weren’t meant to be normal but special, and how we must tell our stories because our journeys were meant to inspire the world.”

…and inspire she does!

Since I saw her post on Facebook recently, I’ve been thinking about the ways that our online connections with groups for chronic disease sufferers benefit not only individuals, but the progress of finding out what is going on. There are a lot of questions about how these conditions/syndromes work, where they come from, and most important — what can be done to alleviate or even cure the problem? Are they actual diseases, allergies or something else? Are they modern problems or something older, but ignored?

This is about much more than people connecting with each other on a personal level because of their common issues. When someone is diagnosed with a chronic illness, they often don’t know anyone at all who has issues anything like what they have, because of their rarity, and because these illnesses are so often invisible, with no outer signs that anything is wrong at all. Not everyone has loving support systems like I have, like Marie has. I’ve found that more often than you’d think, people are even being told by their doctors that their condition is imaginary.

The online communities bring people together, though it is not only sharing stories and finding comfort in knowing one is not alone. It is about sharing information and keeping informed. There is plenty of snake oil out there, however, and having access to a group or forum helps save members their money and sometimes even their health.

Many, if not most, of these conditions have no cure, and modern medicine often has no idea what to do about them. Sometimes the only thing available is pain management, and even that is getting a bad rap these days. By connecting with others online, it is often possible to find ways to deal with chronic illness that people may not have known about before. Doctors may not be aware of the newest treatments on the horizon, as today doctors are burdened with paperwork and following ever-more-complex regulations, and may have only a few minutes to talk to individual patients. I’ve found doctors often don’t want to admit it when they’re out of their depth, and some don’t feel they’ve done their job unless the patient leaves the office with at least one prescription in hand. In some cases, this kind of approach can cause more problems than doing nothing.

This is one case, though, where alternative medicine is welcomed and sometimes even embraced by otherwise disdainful MDs. Most doctors are interested in curing people’s ills, or at least easing their discomfort if that’s all they can do. So when the patient is prepared to be proactive and asks about trying something that has no clear side effects or is otherwise harmless, then doctors will support their patient’s choice to try things like herbs, acupuncture, or energy medicine.

Meanwhile, everyone involved is looking for realistic cures, and identifiable causes. I’m thinking these things may well start coming from the ideas hatched in the groups, because almost everyone becomes an amateur medical researcher at some point. There is an army of people out there looking for relief, and a good number of them are considering all kinds of alternative ideas that might never have come to light otherwise.

Keeping the awareness alive is critical to making any kind of progress in research. So we are very lucky to have someone like Marie Aprile on our side. She is smart, talented, and beautiful, with the added major benefit of years of media experience. I can easily imagine a bright future ahead for her, one that she is able to do on her own terms.