(Anne’s is a difficult story but it’s a good story in a way because it demonstrates the full force of this illness. Anne’s story is reminiscent of Jenn Brea, Jamison Hill and Mary Dimmock’s son’s stories. Each was a young adult with not just a good but perhaps an extraordinary life ahead of them, only to be struck down suddenly by this illness.
It’s also a cautionary tale from a formerly very active young woman who came down with a seemingly innocent cold and paid a severe price for taking her doctors advice to push harder and then was abandoned by the medical profession.
Thanks to Anne for allowing Health Rising to publish her moving story originally published as “My ME/CFS Story: Report From a Stay At Home Prison” from her book “Trött är fel ord” (Fatigue is the Wrong Word))
I keep banging on the prison cell walls. Can anybody hear me?
I am trapped. How did this happen? How was my active life transformed into imprisonment in a two-room apartment? How did I end up in this state of confined isolation and perpetual torture? And will there be no end?
I have severe ME/CFS—a prison in two senses of the word. I am trapped inside a body which has ceased to function, completely knocked out by disease. I am also trapped in my apartment. All of my days, the days I used to spend outside, in nature, under the open sky, now play out within four walls. Outside my windows I see the trees change with the seasons: gleaming autumn gold, shimmering white with frost, turning green again. I see the people, all busy in different ways. Out there, life goes on. In here, all that goes on is a struggle to endure.
I can’t believe that this is happening; still less that almost no one seems to be reacting. I want to protest, shout out: Help! I need help: hope, a way out. I bang on the prison cell walls. Can anybody hear me?
When I fell ill, I was 28. I was at the beginning of everything good in life—full of energy and blissfully unaware of the existence of a disease called ME/CFS. I was working as a consultant in the field of environment and sustainability—a fortunate combination of career and dedication. Stockholm offered an abundance of good nights out: theatre, live music, icehockey games. Life was social, active, enjoyable.
My best days have always been the ones spent in nature, in the forest, in the mountains and among the islands of the archipelago. Underneath rustling leaves, on paths covered with fallen pine needles, on grey granite rocks with the winds from the Baltic coming in—that’s where I belong.
I used to travel a lot—often to faraway places and deep into inaccessible terrain. I was lucky to have the opportunity to kayak through the greens of New Zealand, dive with manta rays off Costa Rica and hike in the barren mountain landscape of the Andes. A few months before I fell ill, I worked as a volunteer at a research station deep in the Amazon rainforest. I was thousands of kilometers from home and several days’ travel by river from the nearest village, as I sat in the verdant heart of the jungle.
If someone would have told me then that my life was about to diminish into a house arrest of 43 square meters, there is no way I could have believed them.
My “arrest” came in disguise, in the form of a regular respiratory infection, the type that usually comes along at the beginning of the Swedish autumn. The cold turned into sinusitis and bronchitis. My immune system took up the fight, but this time appeared unable to win the battle. All of a sudden it seemed all of my bodily systems had gone off-kilter, unable to return to normal.
This is the simple way to describe my illness: twelve years ago I contracted an infection, and then just never recovered. I am stuck in an ongoing massive immune cascade, unable to recuperate and regain a normal life.
Imprisoned by ME/CFS.
Imagine those days of your life when you are completely down and out with the flu. That is how I feel, constantly.
You know what it is like when your body is focusing all its efforts on fighting a nasty infection. You are utterly exhausted. You lie in bed in a feverish haze, everything hurts, your head is spinning, your joints and muscles are aching. It is impossible to summon up a single ounce of energy. Gravity seems to have concentrated all its force on your body alone, and you cannot move even an inch.
You have no energy to read—perhaps not even to listen to the radio, as your brain cannot cope with any input. No position is comfortable, you freeze, you sweat, your skin is tender to the touch. Your normally cozy bed is no longer the slightest bit cozy. You feel thirsty and would need to get a glass of water, but this appears an effort of insurmountable proportions—simply impossible. Instead, you focus on breathing through your sore throat, breathing in and out, until your body has conquered the infection, come through the ordeal and is able to signal to your immune system to calm down.
Then—finally—strength comes flooding back, the “brain fog” clears, you can once again bend your joints and move your body. Everything seems to snap back into focus, your life spreads out before you again. What was recently impossible is now laughably easy. You get up, take a shower, and life continues. Perhaps you might think to yourself that you hope it will be a long time before the next bout of flu which will have you floored. But you quickly forget the feverish battle of the past few days—after all, it was just a brief moment of a life being lived.
For me, that turning point never appears. I cannot get up out of bed and get on with my life. Instead, I continue living in a perpetual flu-like state. I exist in an all-encompassing, complete exhaustion, often in a sort of semi-coma. And—unlike a person with a normal bout of infection—I cannot count the days until it is over.
A cardinal feature of ME/CFS is that activity leads to deterioration. Even the slightest exertion causes my body to “crash.” Taking a shower uses up all of my energy, and forces me to spend several hours in bed trying to recover. And if I have to take a taxi to an absolutely necessary medical appointment—the only leave from my prison—this puts me in bed with a temperature for a week. I am incapable of managing day-to-day life. Every little activity is a marathon challenge, and I am running this marathon over and over again, every hour of every day—without ever reaching the finishing line, or even a place to rest.
With ME/CFS, the body seems to function in a sort of reverse pattern. Exercise, instead of building it up, breaks it down. With training, my muscles do not become stronger, but rather they become weaker, stiffer and even shakier. If I am up and about more, my dizziness gets worse, not better. And these are not one-off reactions that improve if I persevere through them. Though sounding backwards compared to normal, perhaps this is logical if we think of ME/CFS as an ongoing immunological reaction, as biomedical researchers view it today.
At the beginning of my illness, I made the dire mistake of listening to uninformed health care staff, who advised me to “push my body,” contrary to the signals it was giving me. The theory was that if I started to exercise, my immune system would improve and my health would return with time, even though it might be a struggle to begin with. Of course, all I wanted was to be well again, so I did as they said.
I forced myself to go for walks. I went back to work, even though deep down I knew I was far too ill. Every day, coming home, I would collapse in the hallway, crying from sheer exhaustion and pain. Yet I struggled on. And so my body just got worse and worse, in a descending spiral that finally landed me in my round-the-clockhouse arrest.
How I regret it all! How I wish I had been able to meet a knowledgeable ME/CFS physician at the start of my illness, someone who would have been ableto give me correct advice about rest and treatment. Perhaps then I would have been a free person today.
Instead, here I am in this improbable ME/CFS existence. My dreams—of a family, a happy social life, a productive career, future travels—have all been crushed. I have been severed from my beloved nature, the forest, sea and mountains. My family and friends are becoming ever more distant, as I am unable to see them or even speak to them on the phone. Someone said: “ME/CFS takes your life away, but it doesn’t have the courtesy to kill you.” So true. Many times I find it hard to call this existence a life.
I want you to know that I am not one to give up easily. I have done everything imaginable to get better and regain function. I have hauled my body to a huge number of doctors, tried endless successions of more or less alternative treatments, followed all kinds of instructions, figured out my own paths. I have struggled, battled, rested, tried something new, over and over. I have tried living in acceptance and just letting things be, tried fighting for change, inventing hope time and again. Everything, I have done everything. I remain severely ill.
I have been surprised and disappointed to receive almost no help from the health care services. The doctors are uninformed and, not infrequently, even dismissive regarding ME/CFS. Many are not even aware of the diagnosis, and very few appear interested in tackling anything new.
This fascinates me. It seems that the health care system has a principle of labeling everything that it is unfamiliar with as “non-existent” or even “psychosomatic.” I get the feeling that if it was not in the doctor’s text book when she or he took their medical exams in 1978, then it does not exist.
How does this fit in with the constant progress of science? Of course, there must be a lot of things that remain uncharted. ME/CFS demonstrably exists, and researchers have found abundant evidence of immunological and neurological abnormalities. How can professionals still dismiss the illness? Does science—medicine included—not exist precisely to find answers to the new questions which will always keep arising?
The problem also lies in the structure of the health care system. For each disease, specialists are required. There is clearly no chance of my general practitioner familiarizing herself with ME/CFS research when she only meets the occasional patient. Specialist clinics doing biomedical research are fundamental needs. At present, ME/CFS patients are not referred to specialized ME/CFS care; instead, we are sent out of the system.
Almost no research is taking place in Sweden and while internationally there are some very promising biomedical research projects, time and again the initial pilot studies are not followed by the necessary larger studies, due to lack of funding.
And that is, in fact, the very worst part of my situation: the insight that it need not have been like this. While it is almost unendurable to exist in my body with all the pain and suffering; while it is difficult to bear the contrasts between my life and the lives of others; while it is rough to experience the loss of both elements of the term “quality of life”— still hardest of all is having to live with the fact that it could all have been different.
If ME/CFS specialist care had been available, and if proper funds had been directed towards biomedical research, then my prospects would have been immeasurably brighter. When one gets a chronic disease, one must be given the chance to think: “At least I know we are moving towards a solution. There are lots of people out there are doing research into my disease, developing treatments, getting more and more proficient. There is hope!”
ME/CFS patients are not allowed that hope. Instead, our disease is met by a lack of understanding, sometimes even skepticism and aversion to new knowledge and progressive science. I wonder why it would have to be this way.
Yes, how did it happen? Why am I lying here in the middle of the welfare state of Sweden, imprisoned and in great pain and constant suffering, without any forces working towards finding me a way out? It seems that my sentence—even though I am not guilty—will be prison for the foreseeable future, possibly for life, with continuing daily torture.
I am trapped in here. The people with my fate in their hands—politicians, medical professionals, distributors of research funding—are free out there. I keep banging on the prison cell walls. Can anybody hear me?
- Anne advocates for ME/CFS research from her apartment. Find her Health Rising blogs here
In a great loss to the ME/CFS community, Anne Ortegren, in declining health and seeing no viable future in front of her, took her life in 2018 – adding her name to a long list of people who have done likewise. One wonders when the medical community will say enough to the loss of life and health and give this disease and the people who have it their due.