MILAN — When I was 14, I had back pain that constantly plagued me as an injustice. To exorcise it, I would immerse myself in a crumpled copy of Emily Dickinson's "Silences" or in my melodramatic diary, which I called "The Dying Animal," influenced by the Philip Roth books circulating around the house.
As the aches and pains ate away at my muscles, I was taken from doctor to doctor. Even to adults, it seemed strange that a 14-year-old girl spent her days in bed, dependent on painkillers and unable to cope with the simplest daily tasks without sinking into a painful state of exhaustion.
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After about two years, I was diagnosed with myalgic fibrosis. That diagnosis took a lot of tests, a variety of specialists and an outrageous amount of money -- which, as an Ancient Literature graduate with chronic pain, I will never be able to repay to my parents.
The doctor who diagnosed me was quite well known. And I, after two years of needles and MRIs and in the acerbity of adolescence, told him that he and his colleagues didn't really seem like "luminaries" to me. I was only 16, and they hadn't been able to solve my backache.
Annoyed at first, the doctor then looked condescendingly at my parents and reassured them: I was a smart girl — maybe too smart — and it is typical for smart girls to suffer more, especially with these kinds of issues. Smart girls are more emotional. Emotionality destroys the muscles.
I quickly realized that my life was destined to be filled with sorrows that came and went. The protagonist of my story was a little girl, who was often considered overly emotional, or simply listless. Her counterparts were men who always knew everything — even when it was pointed out to them that they knew absolutely nothing. They were not so different from those Dantean blind men who lead other blind men.
My pain has a name
Fibromyalgia, or fibromyalgic syndrome, is (according to the Rare Diseases Observatory) an extra-articular rheumatic disorder, recognized by the World Health Organization (WHO) in 1992, characterized not only by widespread musculoskeletal pain, but also by profound fatigue and numerous other clinical manifestations affecting various organs and systems.
The main symptom of fibromyalgia is chronic and localized pain (the most common sites are the neck, shoulders, back and legs) or widespread pain throughout the body, a pain that can become so intense that it impedes normal daily activities.
A cure does not exist; one can only try to ease the pain.
Other symptoms include fatigue, asthenia, stiffness, a feeling of swelling, paresthesias, tachycardia, sleep disturbances, headaches and facial pain. Cognitive, gastrointestinal, urinary and sensitivity disorders, dysmenorrhea, vaginismus, allergies, intolerances and lower limb symptoms are also frequently found. Several studies have shown unequivocally that any depressive or anxious symptoms are an effect, rather than a cause, of the disease.
I have no option but to confirm: it is all true, and it is even worse.
My pain had finally a name, but I was still a long way from a solution. And looking at the "luminary," I had already realized that I would have to try to find it myself. Later, I would learn that a cure does not exist; one can only try to ease the pain.
How? One way is with weekly and very expensive sessions of physiotherapy (and similar), which in my case have been not only useless, but also, if possible, made it worse. Two: drug therapies based on muscle relaxants-drugs meant to make muscles relax, antidepressants and analgesics. Three: the consistent practice of activities, such as yoga, or specific exercises devised by a physical therapist.
Losing faith
At the time of that first diagnosis, the result of the treatment the specialist for me was, needless to say, a disaster. I spent entire hours of Greek and Latin classes (literally) sleeping due to the pills and drops. As soon as I closed my eyes, I dreamed, and even in dreams the pain persisted. I decided to stop the medication, but it was not easy. I wanted to be awake and alert again — right away. But drugs required weeks of gradual withdrawal.
So I began to lose faith in the doctors, uniformed exponents of every Big Other and every country, who could do absolutely nothing against my pain. I realized that the pain, this excruciating snake that slithers like a continuous chill from my head to my back, would be with me the rest of my life: I could only learn to live with it.
Today, more than a decade later, after more money spent, failed therapies and a pain that has become familiar and ever-present, the subject of a unique and intimate relationship with my body, this assumption remains unchanged. Indeed the years have only confirmed it.
Some have made me magic insoles. Some have forced me to walk around with a magnet on one eye. Some have tried to teach me the incredible power of mentally generating a heavenly light capable of making any pain disappear. From experts of the body to those of the mind, neurologists, psychiatrists, psychologists and rheumatologists, each has suggested his or her own — always useless — solution.
A world of pain
For years, I stopped looking for therapy. But the worst moments still revive my hope that I can find, if not a clinical solution, at least interlocutors capable of understanding: the desire to lie still, to have a masseur at my disposal, self-sufficiency that cannot last more than four hours, the confused thoughts, the bad mood, trouble falling asleep and the inability to go back to sleep when it is interrupted.
It is difficult, sometimes impossible (and often embarrassing) to explain to others, to all the aforementioned Big Others: No, I am not lazy by nature; my inefficiency, my listlessness, my distraction and my emotional inconstancy are not due to a lack of willpower. Rather, it is the nervous state of a person who lives with a nail perpetually hammered into her spine and pins all over the rest of her body, and who is asked to participate in the world as much and more than those who do not have that same nail in their backs.
The hectic pace of this world is no match for my body. I would like to say to my interlocutors: it is not true that I am not listening to you when you speak, it is just that my world revolves entirely around my pain. And what you think is a state of overthinking is, in reality, the immense effort I am making to look you in the eye without losing my balance.
Might as well try
About two years ago, I read about a doctor in Milan who specializes in the treatment of fibromyalgia, and I decided to give him a try. I thought that maybe something in the medical field had changed in the past few years, that progress never stops. Besides, I might as well try: in the past year, my pains had spread to my hips, arms, wrists and hands. What have I got to lose?
During the checkup, the doctor touches me in about 10 different spots, each time asking me if I feel pain there, and each time I say "I have a lot of pain." Finally, he looks at me with gravity and diagnosed me — again — with myalgic fibrosis. I've memorized the script — it's always the same. My next line is: "What can be done?"
"Well," he says in the grave voice, "it's an extreme solution."
"Almost nothing," he replies, adding "Let us console ourselves: it is not a degenerative disease." Sure but, excuse me, the disease is completely disabling. How can I prove that to the government or to the Others? Impossible, he says, your illness is not yet recognized as disabling. Any treatment? The script continues: the same ones, just a little stronger because I'm older now and can very theoretically be considered "an adult."
The treatment consists of an antidepressant (provided by the National Health Service); a mix of acetaminophen and tramadol (provided by the National Health Service) that I can take up to three times a day, as needed; a 5 mg tablet of melatonin for sleep (not provided by the National Health Service). And, of course, regular visits to "a good osteopath, if you can find one." Of all the gaps in Italy's national health system, the latter is the most serious, as anyone who has ever had to pay the fees of a Milanese osteopath knows: it is, in fact a pharaonic luxury, a sophisticated swankiness for Arab tycoons.
Begging for marijuana
The doctor then lowers his head a little, and in a conspiratorial tone that announces we are about to talk about something outrageous, he whispers, "There would also be therapeutic marijuana therapy, but I can't prescribe it for you." Why not, I ask — please, I beg. He just can't, he says. "You have to go to another hospital in Milan," he says. It is still very experimental.
The experiment, I would love to tell him, is one I successfully completed at the age of 16. And the results were, to be honest, extremely satisfying. Marijuana causes great relaxation, brings back the appetite and, most of the time, puts you in a good mood. Sure, sometimes you may have bad experiences — tachycardia and panic attacks — but those are better than a nail in your back.
The doctor points out, in a fatherly and benevolent tone, that he in any case prefers not to prescribe it. Why, I ask him. "Well," he says in the grave voice — the kind used in zombie movies when they decide to shoot their friend who has just been bitten — "it's an extreme solution."
Knowledge is a forbidden fruit
A little discouraged but nevertheless glad to finally leave the clinic, I set out in search of these medications, determined to follow the prescribed therapy meticulously. Yet the problems began right away.
A pharmacist informed me that 5 mg melatonin tablets are off the market in Italy (they can now be purchased again), but I may be able to find them in Switzerland: "Can't you pop over to the canton of Ticino? It's not that far from here." Another — more reckless — pharmacist found a way to obtain them in Italy, but at a cost of 140 euros for 30 pills. Better give up.
The second problem was the antidepressant. I found it right away and ingested it happily. While it did provide some pain relief, it moved my malaise to other fronts: I spent the day vomiting and shivering, in a deep state of confusion. I knew that I should hang in there and pursue the therapy, but my good will was fading.
Your mind on plants
The aches and pains during that period forced me to spend most of my time in a horizontal position. I therefore devoted myself to reading, which has always worked for me better than any analgesic. I read "This Is Your Mind on Plants" by Michael Pollan, an American author and journalist, which opens with a chapter on opium.
In my broken physical and mental state, I felt as if it written especially for me (yes, it's true, I was prescribed an opioid, but it didn't really have that effect). Poppy cultivation is not illegal, but awareness of what could be achieved by using opium is. Our lack of culture in the use of so-called drugs continues to be rewarded, encouraged and protected. Having tasted the forbidden fruit of knowledge about drugs, Pollan writes that he fears he is already lost, at least in the eyes of the law.
Is not true that a solution to my problems does not exist.
Reading the book gave me a new belief: it is not true that a solution to my problems does not exist. Rather, Western culture, with its consecration of the sanctity of guilt and centuries-old apologia for the expiatory value of pain, has deprived me of the solution.
Opium or mescaline are, in fact, exactly what would help me. Not only me; it would suit all those who suffer from invisible and guilt-ridden illnesses that lack an adequate narrative. Science shows that opium alkaloids are made up of complex molecules almost identical to the molecules our brains produce to cope with pain and gratify ourselves with pleasure.
LSD could be the answer
Browsing the internet, I came across a 2022Vice article titled Are Psychedelics the Future of Pain Relief?, which mentioned that LSD is being studied by several startups and universities to treat fibromyalgia.
James Close, a doctoral student at the Center for Psychedelic Research at Imperial College London and a pain management therapist at Imperial College Healthcare NHS Trust, told Vice that by "holistically" ridding the brain of ingrained habits in the mind, including severe and chronic pain, psychedelic substances can create the circumstances to erase a pre-existing condition and reshape the way one perceives one's body.
In the same article, Dr. Jan Ramaekers, who led the research, said that in the treatment of pain opioids, unlike LSD, require more assiduous intake and are more likely to cause addiction.
Let us stop and think. Let us reopen the issues, without taboos and without resistance.
Again somewhat hopeful for a possible cure, I contacted a specialist at a large Milanese medical center who — from his articles — seemed interested in studying the therapeutic use of psychedelics. He answered me immediately, in the tone of someone who wanted to vent: psychedelics experimentation is not yet possible in Italy, and he cannot predict when it will be.
In any case, he believes they will begin to be used for conditions, such as depression, but not yet for the treatment of fibromyalgia or cluster headaches. And he reminds me that there are many centers dedicated to fibromyalgia in Italy that can help me, even at the center where he works. I kindly reply that nothing has worked so far, but I will try their center as well, no doubt. Truth is: I never will. By now, I know that refrain by heart, as many people do.
My pain is not an individual case; it is estimated that at least 2 millions Italians have fibromyalgia. As I am writing this now — feeling my wrists burning, my whole back contracting and a piercing headache is gripping my left eye — many others are experiencing a similar condition. We live a balancing act to get through each day in the best way possible. My story is only a small fragment of a much longer one that I wish the National Health System would pay more attention to.
End the indifference
In March this year, after a long process, Italian deputies passed six motions to recognize fibromyalgia as a disabling disease. But we need to move faster. In Spain, they seem to have found a way to diagnose fibromyalgia from blood tests; the test, if it is approved, will only be available in two years' time.
Meanwhile, those with fibromyalgia continue to spend their lives in the indifference of others. We stubbornly and animalistically drag on. We do and do, and keep on doing, despite the pain. And we move on. But this cannot be the solution. It is not acceptable that possible fibromyalgia cures cannot even be attempted in our country.
Let us stop and think. Let us reopen the issues, without taboos and without resistance. The solutions may be here — they have to be there — if we decide to open our minds and other paths, with the courage to redefine the boundaries of the cages in which we find ourselves.
Russian playwright Anton Chekhov wrote, "When so many medicines are prescribed against a given disease, it only means that this very disease is incurable." I wish that one day this sentence — that I have tried not to be overpowered by despite its truth being more and more evident as the years have passed — will no longer be able to describe my condition and that of so many others — that one day, it will be false.
