I have suffered from chronic pain and fatigue for almost 30 years, longer if you count the endless headaches I experienced even as a child. My symptoms have some resemblance to chronic fatigue syndrome and fibromyalgia, but I have stopped looking for a diagnosis. Early on one practitioner told me it couldn’t be fibromyalgia because I should be in so much pain I would jump off the table when he pushed the known trigger points. Looking back, I wonder how many painkillers I’d already taken that day, as well as the fact that no two days are the same. As a young person, feeling unwell and the process of dealing with it frightened me for a time, but eventually it became the norm.
Even as I write this, a hopeful text arrives from my sister who suffers similarly, pertaining to a new method of dealing with bloating she just discovered. It is a lifestyle, this never-ending search for coping mechanisms; potions; diets; balms, and exercises. The quest is made slightly more bearable when shared of course, and I can count both of my siblings, as well as a best friend as fellow travellers on this journey. Although none of us is exactly the same, a little moral support goes a long way.
These are not headaches or body pains that will go away after one pill, though you can be sure we have tried almost every medication on the market. I used painkillers almost recklessly in the past, unaware of how dangerous they can be. Antacids became another favourite, as my digestive system was beginning to break down, and even when a magazine ad helped me identify one of my issues as lactose intolerance, I seemed helpless to repair it.
In the decades that followed we have also learned more about the dangers of overusing antibiotics, another checked box for me, having developed chronic bronchitis in high school and stayed on the pills for a couple of years when a doctor said they might also help with my moderately severe acne. Of course I did! I had tried everything else available to me for my skin condition as well, to no avail.
In university my doctor gave me some information on IBS and recommended Metamucil. Following the prompting of friends who were concerned about my snoring and strange breathing at night I was also referred to a sleep clinic, the result being a senior doctor who greeted me in the morning with the news that he thought I was just depressed (this without even a five-minute consult). I didn’t think depression was the cause of all my problems, and my regular doctor agreed, but we decided I would try antidepressants for a time anyways (thus beginning a decades-long pattern of going on and off of Prozac). I also discovered Accutane for my acne and, in that case at least, some progress was made.
(Note: years later a second sleep test was similarly disappointing; I had hardly slept a wink in the special hospital room and the doctor told me if I really had sleep apnea I would be so tired that I would fall asleep immediately - only later did I think we should have had a more in depth dialogue about how my anxiety might have affected the test, as these were the only times I had ever stayed in a hospital, and I could feel the stress of anticipation coursing through my veins as I tried to sleep with all the electrodes connected to my head, imagining that I had finally found an answer to my years of fatigue and who knows what else. I also think they took one look at me as a young woman (in my mid twenties the second time around) and didn't believe I was a likely candidate for obstructive sleep apnea. At least he didn't tell me I was just depressed.)
I have been exploring alternative treatments virtually since the beginning, thanks to an aunt who was into such things, and began going to a chiropractor in my teens to help with headaches and neck pain which was partly due to strenuous study habits, mixed with several injuries. Over the years I have tried acupuncture; physiotherapy; naturopathy; osteopathy; massage therapy; herbal medicines; functional medicine; special diets; yoga; and earthing, all with only mild relief. I finally discovered prescription migraine pills which vastly reduced the amount of time spent confined to bed each month. I recognized that anxiety had played an underlying role for much of my life and have spent years researching and trying various remedies for that tricky trait. Depression has continued to be a concern, but I still don’t give any credit to the doctor who diagnosed it without even talking to me first. My mental health struggles are real enough that when filling out forms where such questions are asked, I always pause and wonder what the right answer is. Because I have always managed to function – i.e. hold down a job – I’ve always decided to say I have never been diagnosed with mental illness. But I’m not really sure where the dividing line should be.
I have largely tried to avoid identifying with my health problems, but as a middle-aged woman, it is hard to find an area of my life that hasn’t been affected. My career shortcomings and decision not to have a family have both been heavily influenced by the lack of energy that makes each day a struggle. It is at times a depressing reality. While I sometimes blame the medical system for not having the cures I need, it might be more realistic to look at the issue with a wider lens. With so many health concerns affected by stress and environmental factors, how many of us would be healthier if we didn’t have to adjust to societal norms, schedules and atmospheres that are not right for us? How many might benefit from a return to a more tribal social structure, with greater social supports and more natural life rhythms?
I am currently working from home for the second time in my life, and so thankful for this arrangement, which is so much easier on me than the jobs I've held in the past. Of course, it is hard to explain to new friends and acquaintances why I so seldom leave the house. Because it takes so much effort to walk and catch buses when I’m already exhausted and everything hurts; it is so much easier to deal with pain when I have all my hot water bottles, pills and accoutrements right here at my disposal. Because I don’t feel quite right in my head when I am out in the world. Because I like my quiet, controlled environment just fine (especially the ability to take breaks as needed and not on some predetermined schedule). Because the years of being out there all the time were really hard and took a toll that I am still recovering from. I’m not sure if it’s worse to be thought of as just strange, or to give it a name. So, for the most part I just let them wonder as I attempt to contribute to the world from a more protected place, at home with my pain.