Advocacy - My Story

A couple years ago I wrote out "my M.E. story". I was frustrated and felt I wanted to advocate for M.E. sufferers in some way. I gave a copy to the provincial support group for their newsletter, however, they never ended up publishing it. I've made a few edits to it over time and I figured I'd post it here on the blog if anyone's interested. However, it is pretty long, so feel no pressure to read it.

MY M.E. STORY

THE BEGINNING

My story about Myalgic Encephalomyelitis (M.E.) or Chronic Fatigue Syndrome (CFS) begins in 2002, back when I was in my early thirties. Following University I worked for eight years as a wilderness educator. For six years I worked for an organization called Outward Bound (in England for a year then for 5 ½ years in Northern Minnesota). Outward Bound is a not-for-profit that focuses on team building, leadership and personal development often through the use of wilderness expeditions. I really enjoyed my work. I had many hobbies (running, skiing, dog sledding, rock-climbing, music etc.) as well as a close group of friends/social life.

Then one weekend in June, 2002 just after I turned 32 everything changed. I came down with what felt like the strangest flu. I remember my chest hurting and feeling sweaty, shaky, and dizzy. I was flooded with these waves of exhaustion and weakness. I took myself to a clinic (I’d only seen a doctor once in the previous 5 years) where they ran some tests including checking for thyroid and Lyme disease. I was told I had a fever. That same afternoon I got a call informing me that I had mononucleosis. Ironically, I was also told that it would last two to six weeks. 

The next year was one of the worst in my life. As the weeks and then months went past I didn’t seem to be recovering from the Mono, in fact, I appeared to be getting worse. I considered myself to be a tough person. Heck, I’d led an eight day winter dog sledding course with bronchitis once. I could carry a 70lb canoe a kilometer without a break. I’d run a half marathon that year. At that point in my life I believed in the philosophy that anything was possible and that most obstacles could be overcome with positive thinking, strength and toughness. How wrong I was.

I kept trying to work. I cut down my hours. Outward Bound worked with me to modify my schedule. For a year I would work a few days and then completely crash for a few days. I didn’t understand how I could go from fairly functional to completely disabled, sometimes all within the period of a few hours. I would get up in the mornings and go to work, two hours later I’d be back in bed. I would take a 2 hour lunch and skip eating just to lengthen the time I could rest. When it was time to return to work at one or two o’clock I’d find myself crying just with the effort to get out of bed and walk the short distance to the office.

THE DIAGNOSIS

Every few months I would return to the local clinic in an attempt to get some help. At first they told me it was a lingering Mono infection. They would run more tests, be baffled by my continued fevers and weakness, however, have little advice to give me as the tests came back normal. Finally, after six months and little improvement I consulted with an Internal medicine doctor who decided to give me a diagnosis of Chronic Fatigue Syndrome (CFS).

I remember sitting on the examining table feeling terrible. I was overcome with flu-ache, head pressure, sore throat, dizziness, painful lymph nodes in my armpits, digestive problems, and worst of all, extreme fatigue and weakness. He told me he thought most likely I had CFS and handed me his medical book that had a description of CFS in it. He said he’d always considered it to be a non-entity, but he believed I was sick and couldn’t come up with any other explanation. I looked at the name ‘Chronic Fatigue Syndrome’. “I don’t believe it’s an illness either.” I remember telling him. What I had was a lot more than being chronically fatigued. I mean everyone gets fatigued. This weakness I had was worse than the fatigue I’d had on the worst day of the flu. And I felt more than tired. I felt sick – really sick. To me, there was something very serious going on in my body and it felt a lot more severe than any condition that could be called Chronic Fatigue Syndrome. However, as I read the description it did seem to fit. An illness that often strikes after having a serious virus (like Mono); all my symptoms were listed. But there was no known cause or treatment and according to the book it could last for years.

THE "CHRONIC" IN CHRONIC FATIGUE SYNDROME

I went on to see other doctors. An infectious disease specialist confirmed the diagnosis and when I didn’t improve, in fact got worse, I lost my job. Unfortunately my housing came with my job so I also lost my home. Over the next two years I slowly spent my savings, living on people’s couches and in their spare bedrooms. I tried naturopathic, chiropractic, energy medicine, homeopathic, counseling, exercising, changing my diet – anything that might help me dig my way out of this hell. While my friends believed that I was sick, there was skepticism from doctors and people I didn’t know. It was suggested explicitly or at other times subtly that I was ‘just tired’, needed to exercise, or that somehow my problems were motivational or caused by depression.

Eventually I ended up back in Ontario where I’d grown up but hadn’t lived for almost 10 years. Besides a few family members, I barely knew anybody. My support network was limited. During that period my living conditions were always temporary as I surfed from friend to family member. The longest I lived anywhere was 6 months. More often I’d stay somewhere 2 or 3 months only to move on to another place - someone else who might put me up for a little while. Once I stayed in someone’s home office, other times in a spare bedroom, even living in an unheated tent trailer for a few months one spring. Unfortunately, I was running out of options. I kept thinking I would get better soon, or improve enough to get a job. I saw this illness as a temporary thing even 2 1/2 years into it. Some days I would feel less sick and take it as a sign I was improving, getting better. Other days I would get up, get dressed, make my bed and have to rest for ½ hour just from the effort. Some days I didn’t have the strength to stand in the shower, walk a block, or fold laundry. Months passed in what seemed like a blur. I spent most of my time in bed. It was frustrating and baffling. I was no longer able to understand or make sense of my own body.

FINDING AND ACCEPTING HELP

However, I was still unwilling to accept that the M.E./CFS wasn’t going away. Thankfully I found an M.E./CFS specialist who strongly encouraged me to fill out an application for disability. While I couldn’t face how sick I was, I guess she was able to recognize that I might need to accept some financial help for a while. It ended up being very good guidance. It took almost a year and a half until I navigated the process and was finally granted ODSP. In some ways it was a life saver. Still, every time I receive a check, it’s a little bit of a knife in the gut. I don’t want to be living off the government, taking charity. On the other hand, without the help I don’t like to think about where I might have ended up. Being relatively young when I got sick, I’d never imagined any situation where I couldn’t support myself. Disability was for other people – maybe older people or folks in desperate situations – but not for me.

On receiving ODSP I was able to rent a cheap bachelor apartment and start to build a little stability back into my life. I don’t know where I’d be today without the ODSP or the support of that one doctor. Even though she hasn’t been able to ‘fix’ the M.E./CFS, my quality of life is so much better than it was. She has treated me with respect, dignity and compassion that few other doctors seem to be willing to afford patients with M.E./CFS. Either they are skeptical and dismissive or they are uneducated about what the illness entails or how to help people with it. When you’re sick and disabled with the never ending flu and unimaginable fatigue and weakness, a skeptical doctor and tenuous support network can lead to depression and despair. The last thing a vulnerable person needs.

BUILDING A POST-ILLNESS LIFE

Today, more than seven years into my journey with M.E./CFS, unfortunately I’m still sick. But as apposed to the first few years with M.E./CFS my life now has some stability. I have a roof over my head and enough to eat. And over the last few years I’ve even improved a little. I’ve learned to pace myself and rest, and more importantly not berate and blame myself for being sick (even though others might). I’ve also taken up graduate studies part-time where I’ve been given the flexibility to proceed at my own pace. It has given me some sense of accomplishment and self-worth despite my daily burden of illness and inability to maintain any amount of consistent energy. 

ADVOCACY (or Not)

I still try to avoid telling other people or doctors that I have M.E. There are still a lot of misconceptions and skepticism about the illness. However, when people know someone personally who’s afflicted, they seem to be more believing and supportive. I think a lot about what can be done to make the situation better for people with M.E./CFS and two main things come to mind. 

First, I wish the medical community as well as the general public were better informed about the illness; both what it entails and how it affects people. There’s just no reason that anyone would want to pretend or “fake” an illness as awful and disabling as this one. Why would anyone give up career, social life, hobbies and sometimes even their home in order to lie around sick all day? I want people to stop minimalizing M.E./CFS and thinking it’s just about being tired. Because it’s about being disabled by a fatigue and weakness regular people never experience and it’s also about being sick. It affects all kinds of systems in the body; neurological, immune and metabolic, to name a few.

Second, there is a real need for more and better research. When I consider the number of people sick with this illness (4.2 per 1000 people), it blows my mind how little research is being done to investigate the causes and find treatments. Maybe it’s because most people don’t die from M.E./CFS. Still lots of lives are ruined and the cost to society is still significant (in the U.S. they estimate 9.1 billion dollars a year). Canada needs to invest some time and money into this problem.

On a personal level, I’m hesitant to be an advocate for myself and others with the illness. I don’t want people to know that I have M.E./CFS because of the stigma that is still attached to the illness. When I do disclose to someone about M.E./CFS I don’t want to always have to explain and/or defend myself. I wish it were like other chronic diseases like M.S., heart disease, or diabetes where there’s at least acceptance and understanding in the public that they are real and disabling conditions. I want things to improve, both for me and the M.E. community as a whole. I hope at least one person reading this will be inspired to be more supportive and help to advocate for people who suffer from M.E./CFS.