Suzanne’s Story

Living with Bertolotti Syndrome

The Netherlands

I was born in 1957. As a child in the Netherlands, I had difficulty walking, which irritated my mother. She would drag me to the shops, and I would stumble over my own feet. I remember going to a therapist; I must have been four or five. It was the first time I had seen a poster of a skeleton and the muscular architecture of the human body, and it frightened the hell out of me.

At home, I had to roll up a towel and pick up marbles with my toes. My dad guided me through these exercises. I do not think we kept them up for very long. I saw another image of a skeleton at the dentist. In a cartoon on the wall, a dentist pulled a patient’s tooth. Instead of the tooth, the entire skeleton emerges from the patient's mouth. I was terrified of this cartoon.

Later, I had to walk with a book on my head to correct my posture. We used Grimm's Fairy Tales, a thick book with a red linen cover. I walked up and down the room with it on my head, but this exercise, too, was not repeated consistently.

When I was ten, I joined a gymnastics club and became very good, but I could only do the splits with my left leg in front; with my right leg in front, I felt intense pain in my groin. I also rode horses; my body was trim and muscled, but I hated walking and my left foot was strongly turned inward. Because of the inward-pointing foot, I was encouraged to take classical ballet lessons.

Belgium

I began having severe lower back pain in 1978, after the pregnancy and birth of my first child. I was twenty-one, a dancer, living with my young family in Ghent, in the Flemish part of Belgium. I had done a

lot of classical ballet in my teens, but had been rejected by a professional ballet school. I continued my dance studies with Min Tanaka, a Japanese dancer who gave workshops in Europe at that time. My

body was extremely well-trained. I could lower my upper body all the way to the floor between my spread legs when sitting, but I could only roll my leg backwards from this position on one side, never on both sides like my dance comrades, no matter how much I trained. It was simply impossible.

My first child was a heavy baby. Carrying him was difficult. He sat on my right hip; that worked better than on my left, as this hip seemed higher than the other. I went to my general practitioner for my backache. He said some lower back pain was normal after giving birth. He recommended the mules that nurses wore at the time: wooden soles with a thin anti-slip rubber finish and leather tops.

My second child was born eleven months later. I now had to pick up two babies, and my lower backache was getting worse. A physiotherapist said, “Your right leg is at least three centimetres shorter than your left.” A special right shoe was made with a three-centimetre-thick sole. It did not make the pain go away; on the contrary, it got worse. But I was in the chaos of small children, jobs, housekeeping and being young, so I learned to soldier on and live life with pain and on courage alone.

Medical doctors consistently dismissed my problem, so I tried some alternative approaches. I had to go with what was around at the time, and that was not much. A homeopathic practitioner prescribed me vegetable soup. He gave me the recipe. I ate the soup until even the smell of it nearly made me puke. A “seer” said there were “invisible splinters” in my body, and he pulled these splinters out with his hands for a hundred dollars or so. Needless to say….

A chiropractor made me come back twice a week for a year. He said I was clenching my teeth and that that caused my pain. Every treatment lasted less than five minutes. He earned a very decent living that way.

The higher the level of deception, the more confident they seemed, the quacks. But the medical doctors were not much better. Their total absence of curiosity about my condition and their confidence astonished me. How could so much pain be “in my head”?

Japan

We moved to Japan because there was work there. Belgium was in a depression in the 1980s. Tokyo, on the other hand, was going through its economic boom, and anything seemed possible. I worked, and my husband looked after the children. I loved Tokyo and my work there, but the backache was getting worse. I went to mainstream doctors again, and they said with great confidence that there was nothing wrong with my spine. The pain was probably “in my head”. So, again, I sought alternative pathways.

I went to an acupuncture clinic where all the doctors were blind. One of them put about sixty needles in my back. He then went on and on about me being a gaijin (foreigner), and I had my first anxiety attack on the treatment table. Many anxiety attacks would follow. I was in terrible pain, but doctors either denied that anything was wrong with me or ignored the pain and told their own stories. In the end, I believed there was something very wrong with me; I just did not know what.

One day, at home in Tokyo, I had my first “attack”. It felt as if a thick string in my back was being plucked; there was a distinctive pang, and then a collapse of the upper body muscles and legs followed. From then on, I had these attacks on a regular basis. The pain was so bad that it made me vomit or nearly pass out. Another round of doctors, X-rays and MRIs followed. Again, I was told it was probably in my head. The gap between the reality of the medical practitioners and mine became so large that I had terrible anxiety attacks.

Nobody simply believed I was in pain or even wanted to listen to me.

A friend recommended a shiatsu practitioner. His name was Wakui. He sank his thumbs deep into my sore muscles. He did not take any X-rays or scans; instead, he gave me a drawing with his diagnosis. I have forgotten what was on that drawing because of what followed; I later threw it away. I was again crippled by pain. Wakui’s practice room was on the second floor. It took me some time to climb up to a ten-tatami room

with a futon on the floor. I was twenty-eight years old and walked like a very old person. I and my pain entered the room. My friend introduced us. I and my pain bowed. Wakui spoke not a word of

English but tried anyway. I told him I spoke some Japanese and understood some more. He draped a white towel over the futon and gestured for me to lie down, face-down. My friend sat down on the tatami and stayed in the room while Wakui sank his fingers into my hip muscles. I jumped and screamed.

“Bingo!” he said, laughing.

After he had massaged my hips, lower belly and lower back with incredible force, throwing all his weight into it, I felt somewhat lighter when I got up. There seemed to be a core strength that had not been there before. So I kept going to Wakui for months, at least once a week. He was not very expensive. He was a handsome and fun married man, father of two. I liked him a lot. There was a photo of his wife and children on the windowsill of the practice room; you could not miss it. The room was bare but for a stack of towels

and the futon. The money for the sessions went on the windowsill.

Sometimes there was a small fortune piled up. Talking was done standing up in the middle of the room.

After five months of becoming stronger but not entirely painfree, Wakui invited me on a trip. Another patient of his was coming too. We would visit an onsen. The hot mineral-rich water might be

good for me, he said.

“I have little money,” I said. “I am going to Nichibei Kaiwa Gakuin."

“Wooow, Nichibei Kaiwa Gakuin,” said Wakui in awe. “Expensive! Japanese course?”

I nodded. “Three years.”

“You don’t need any money,” said Wakui. “I pay.”

“I cannot accept that,” I said.

“I am your doctor. This is medical order,” he said. “Meet me tomorrow at the Shinkansen platform at Shinjuku Station.”

I called him in the evening. “I really can’t accept your offer…,” I

began.

“I’ve already bought the tickets,” he said. “No way back. Money

is no problem.”

I thought about the stacks of money on the windowsill and the photo of his wife and children. I did not understand the situation. He obviously made a rather good living, but he had a family to take care of.

“Okay, I’ll be there,” I said, unsure. Was he coming on to me?

“It will be fun. You’ll meet lots of people,” he said.

“How long are we going away for?”

“Four days.”

The next morning, on the platform of the bullet train, I was introduced by Wakui to Tanabe, who was seeking relief from symptoms of cancer treatment. We boarded the train. I have forgotten where we were headed (I am writing this more than four decades after it happened), but it was a famous onsen area. Maybe it was Beppu.

I felt a bit awkward with the two Japanese men on the train at first. Tanabe did not speak any English and was clearly overwhelmed by my presence. I tried to make myself small. But Wakui was excited. He pointed out of the window enthusiastically and talked in very broken English about the clouds and the rice fields, and anything else that caught his attention. When we got off the train, we did not,

as I had expected, go to a local inn, but to a private house deep in the countryside. We opened the windows of the taxi that took us there. The fresh mountain air was wonderfully cool and refreshing, and

smelled of pine trees. We saw people with large straw hats working in the rice fields. The sound of mountain streams and waterfalls could be heard.

We arrived at a large one-storey wooden house behind a gate. Several generations of what seemed a large family flocked to the garden to greet us. We were surrounded by very old people, people our age, and children. Wakui seemed to know them all. They led us to a large tatami room in the heart of the house that was empty but for a bright-pink futon.

One by one the people present received shiatsu treatment. Some were so old and bent over that they could not even lie flat. Those who were not receiving treatment sat around the futon, chatting, laughing and gossiping, some with a child in their lap. Wakui was clearly enjoying being the centre of attention. He sank his strong fingers into sore backs, hips, shoulders and necks, all the while chatting excitedly. In the end it was Tanabe’s and my turn. When I, the blonde gaijin, was treated, the chatter ceased, and there was silence.

After my shiatsu sessions, we all had dinner in the next room, where a long, low table was set. What felt like billions of small dishes were brought out in a seemingly endless stream while we ate and

drank hot sake. This went on for several hours and, because I did not understand the situation or who all these people were, I drank too much. So did Tanabe and Wakui. To say that they were drunk is an

understatement. They were wasted. We were given a room next to the dining room, where three futons were rolled out for us.

The next day, we were taken to an onsen where the water was scorchingly hot and smelled strongly of sulphur. I mimicked those around me. With wet towels on our heads, we soaked in the yellow waters for hours, huffing and puffing in the steamy air. This went on for three days: shiatsu massage sessions, food and sake, and onsen.

Repeat. Wakui remained vague about the nature of his relationship with the people we were staying with. I never found out. During the fourth night, while Tanabe was sleeping, Wakui rolled into my futon

and tried to make love to me. “You have a wife and children,” I whispered. He crawled back into his own futon and later pretended it had never happened. My fondness for him was gone. What the hell? But

being the pleaser and yes-woman I was back then, I never confronted him. I just stopped going to his practice. I never heard from him again. I was alone with my pain again. I threw away his damned

drawing and all photographs of the trip to the onsen.

After that, my anxiety attacks became so bad that I needed a psychiatrist. He was American and could not prescribe medication in Japan. After a year and a half, the attacks became less frequent. What had begun as a backache was now a mental health issue too. Looking back, I understand why I was getting these anxiety attacks. The situation was completely terrifying: I had had years of crippling pain, and doctors blamed me for it. Me and my brain. Every time I had an “attack” (I now know that my hardworking muscles just collapsed under the pressure of keeping me straight), new scans and X-rays were taken on a regular basis. I was told there was nothing wrong with my body.

The Netherlands revisited

When the economic bubble in Japan collapsed in 1992, we returned to Europe and settled in Amsterdam. I decided to have a full medical check-up once more. After more X-rays and scans, I was referred to a manual therapist who said, “We don’t know why it works, we just know that it works.” She used wooden wedges and hammers, but they did little or nothing to alleviate the pain. I had always avoided pain medication and drank wine instead. In my twenties, I self-medicated with half a bottle of wine a day; in my thirties, this became a whole bottle, always in the evenings; in my forties, sometimes even more. This was clearly not sustainable, and I stopped drinking alcohol entirely in my early fifties. Pain medication was now the only option left. I took as little as possible, mainly Diclofenac, which eventually caused a rash on my arms and legs. By then, the amount of money I had spent on practitioners, masseurs and equipment (books, inversion tables, exercise balls, stretchers, massage machines, EMS machines, belts, special shoes and a number

of strange contraptions) was probably close to the value of a large house.

Australia

In 2000, I moved to Australia, fulfilling a lifelong dream. I was single again (no relationship had survived the pressure of my ongoing pain), and my children were now adults. In Australia, I entered the mainstream medical maelstrom yet again, hoping that this enlightened country would finally provide answers. It soon became clear that even the excellent Australian health care system had no explanation, let alone a solution, for my pain. I had regular backache attacks, followed by extreme weakness and fatigue.

I first lived in New South Wales, where a chiropractor told me again that my backache almost certainly stemmed from my cheek joints. The muscles around these joints were extremely tense. I let him treat me for about a year, but there was no improvement at all.

In Nimbin, a couple practising Ayurvedic medicine danced around me while I lay face down with a pile of warm chickpea dough on my back.

On a trip to New York City, I visited Dr John Sarno’s back pain clinic. Sarno had written several books on back pain caused by suppressed anger, which I had eagerly devoured. Maybe this was the answer to the long-standing mystery of my pain. Maybe I had the Tension Myositis Syndrome (TMS) that Sarno described. Maybe my brain was causing the pain, and not my bones and muscles.

I studied Buddhism for a couple of years and became a mindfulness and meditation instructor. I even stayed in a Buddhist monastery for six months, where I sat still with my legs crossed twice a day for two hours, wondering why my right side hurt so much. I studied the work of every TMS practitioner I could find.

Now, I believe that Sarno’s work and the whole TMS movement are dangerous for people whose pain is actually caused by Bertolotti Syndrome or other structural abnormalities of the spine. The core message of TMS is that most chronic back pain is generated by the brain as a reaction to repressed emotions, especially anger. Pain is framed as a kind of psychological smokescreen that distracts from uncomfortable feelings. This means that, from the start, the search for a structural cause is treated as almost suspect. For someone

whose spine is genuinely malformed, this is not just unhelpful; it can be actively harmful.

If you have Bertolotti Syndrome, the pain comes from an abnormal bony structure in the lower spine, with joints and bone-on-bone contact that should never have been there in the first place. Yet in the TMS framework, you are encouraged to treat the pain as a trick of the mind. You are told to ignore the body, to stop looking at scans, to stop “feeding the pain” with attention, and to focus instead on journaling, uncovering anger, and challenging “false beliefs” about structural damage. When the cause of the pain is actually mechanical, all this does is delay correct diagnosis and appropriate treatment.

Years, sometimes decades, can be lost in this way. I journaled; I even wrote down my entire life story to uncover probable youth trauma. Another danger of the TMS diagnosis lies in the way responsibility is shifted onto the sufferer. If your pain does not improve with TMS techniques, the implication is that you are somehow doing it wrong: you are not honest enough with yourself, you are not facing your anger, you are too attached to your “pain identity”. In practice, this can deepen shame and self-blame in people whose bodies are already failing them for reasons completely outside their control.

I talked to my brain for years. I said things to it like: “Brain, take away the pain. You have put it there. You can take it away.” Instead of being taken seriously, the TMS believers internalise

the idea that their continued suffering is a sign of psychological weakness or lack of insight. For someone with Bertolotti Syndrome, this adds a layer of emotional distress on top of the physical pain.

There is also the problem of how TMS ideas are picked up and repeated by health professionals, family and friends. Once the label “psychosomatic” or “mind–body” has been attached, it becomes

even harder to persuade anyone to consider a structural cause. New symptoms are dismissed as “just TMS”. Requests for further imaging are seen as catastrophising. Doctors who sympathise with TMS theories may feel justified in refusing referrals because they believe more scans will only “reinforce the pain narrative”. In my view, this is a form of institutional gaslighting: a real, detectable, anatomical problem is not looked for because a psychological explanation has become fashionable.

Finally, the TMS model gives a false sense of safety. It reassures people that there is nothing structurally wrong, that they can push through the pain, and that ignoring physical warning signs is not only safe but therapeutically desirable. For someone whose vertebrae and pseudo-joints are grinding against each other in ways they were never designed to do, such reassurance can encourage damaging levels of activity or the neglect of necessary rest and protection. What is presented as empowerment can, in these circumstances, turn into slow self-harm, guided by a theory that simply does not fit the underlying condition.

For all these reasons, I now see Sarno’s work and the wider TMS movement as a serious risk for people with Bertolotti Syndrome. It diverts attention away from the spine when the spine is exactly

where the problem lies. It encourages self-blame and fuels gaslighting by others. And it can keep sufferers from receiving the structural diagnosis and treatment they desperately need.

I moved to Alice Springs in Central Australia in 2004 and had my back examined there. I had several attacks that led to hospitalisation. In the emergency room, I encountered a doctor who clearly thought I was faking the whole thing. Later, a visiting spine surgeon labelled my problem myofascial pain syndrome. I developed PTSD from the ordeal, saw both a psychologist and a psychiatrist, and started taking anti-anxiety medication again. I had several X-rays and MRI scans. I did yoga and bought a whole new generation of equipment from the ever-growing wellness industry.

I began juicing and took all sorts of supplements. I never stopped searching for an answer. I read everything I could find about lower back pain. Ten or twenty or thirty therapists, doctors, masseurs and chiropractors later, my GP finally placed me on the waiting list for the pain clinic at Alice Springs Hospital. It took a year before my name reached the top. By then, I was well into my sixties.

During that year, I turned to mushrooms and ayahuasca for answers. I took these substances with one specific question: What is wrong with my back? I took somatic healing classes, and these helped me tremendously to deal with the pain. I can definitely recommend them. I have even written a small book about it: Find Your Ikigai (published by Clear Mind Press).

One night on ayahuasca, I experienced intense, hallucination-like states. During that trip, a blind Japanese man walked up to me and handed me a drawing. The next day, over coffee, I sketched what I had seen for my friend Marilyn. (So I have a witness to this almost unbelievable part of my story.)

“The Plant has spoken,” I announced. “It said this.” The drawing showed my L5 vertebra with butterfly-like “wings” on each side. One of these “wings” was connected to the sacrum. Not long afterwards, I went to my GP and said, “I’ve done some research. I think I have this.” I placed the drawing on her desk. “No,” she said, “what you have is wear and tear of your spine.”

Then came the appointment with the pain clinic. The doctor was a warm, kind woman from India. “Do you know what you have?” she asked. “Wear and tear on my spine,” I replied, having long since dismissed what the Plant had told me. “Sit down, dear,” she said, and began to draw on an A4 sheet of paper. To my astonishment, she drew exactly what I had seen in my trip and what I had drawn for Marilyn. Next to it she wrote: “Bertolotti Syndrome”.

At first, I could not speak. Then I started nodding. “Yes… yes, that is what it is,” I said. The rest of that visit is a blur. I think I cried a little. Afterwards, I had to sit down for a while; my legs were too weak to walk.

 That was about a month ago.

The doctor had given me prescriptions for three medications to relax my muscles: Tramadol 50 mg, Amitriptyline Viatris 30 mg and Baclofen 25 mg. I was already taking Mirtazapine 30 mg for anxiety.

This cocktail turned out to be enough to bring down a horse. I took them for three weeks and then quit them all. I now call it “the chemical rape”. Since receiving the diagnosis, I have read and read, and I know

that the prognosis is bleak. I have type 1A. I am too old for an operation, says my doctor.

In recent years, I have found some relief by using an expensive rebounder with bungee cords, and I have a Pilates reformer in my living room. They do nothing for the pain, but they keep me mobile and my core strong. I go to yoga off and on, when I can.

For forty-eight years, I had been told that my pain was in my head, in my personality, in my childhood, in my emotions, in my “pain identity” – anywhere but in my spine. I was screened, scanned, therapised, spiritualised and psychologised. I worked hard on myself.

I changed my diet, my thoughts, my posture, my shoes, my breathing and my beliefs. None of it touched the pain. It was not for lack of effort or lack of goodwill. It was because a malformed vertebra was grinding away at the edge of my sacrum, and nobody had bothered to look for it properly or to name it.

Getting the words “Bertolotti Syndrome’” written on a piece of paper did not take the pain away. It did something else. It ended the madness. It closed the gap between what I felt in my body and what I

was told to believe. For the first time in my life, there was a structural explanation that matched my lived experience, from the awkward child stumbling over her own feet to the sixty-eight-year-old woman

crawling through back attacks in Alice Springs. There is grief in that recognition – for the decades lost to quackery, to gaslighting, to well meaning nonsense, to being a “difficult patient”. But there is also relief. I am no longer lost in a fog of theories. I know what this is.

The diagnosis has not brought me a miracle cure. I am too old, according to my doctor, for the operation that might help. My spine will not be remade. My days still revolve around managing pain, fatigue and weakness, around strange devices in my living room and exercises that keep me just mobile enough. But the story I tell myself has changed. I stand in life completely differently. The pain is not a moral failure, not a lack of spiritual progress, not repressed anger misbehaving. It is bone on bone. It is anatomy. It is real.

I have thought the entire medication/specialist through and this is my conclusion: I have managed this BS condition without anyhelp for 48 years. with the help of study, reading, meditation, mindfulness, and art, I have developed a glowing mind. Now a doctor, whom I see once in 3 months for 10 minutes, wants to get me "more active". As if I have not tried anything and everything under the sun.

The first round of meds melted my muscles so that I am now more lopsided than ever and need a walking stick. My mind and personality changed to something that isn't me. I lie flat because that's the only way to not be in pain. Why would I give that up? Why would I have any confidence in that? If I can't have an operation, then the road ends here. I could start drinking Drambuie, like the artist Dale Frank, who has a terrible back, but then I could not drive.

I think my road with the medical profession has finished. I am on my own with my Pilates Reformer, my rebounder and recently I added swimming to my daily routine.

There was a writer in the Netherlands, a woman in a wheelchair whose name I have forgotten, who coined the term "the in-between the-ears-mafia". She claimed that a part of the more alternative part of the medical profession was gaslighting her into believing that she was to blame for her illness. I have that feeling too.

After feeling stripped of mind and body by severe pain and muscle-relaxing meds, I decided to practice Sovereign Health. I will take as little medication as possible. I will keep my medicine regime in my

own hands.

If there is a purpose in telling this story, it is not to frighten anyone with Bertolotti Syndrome, but to say: you are not crazy. If your pain does not behave like “ordinary backache”, keep asking questions. If you are being pushed towards purely psychological explanations, ask whether your lumbosacral region has been properly imaged and assessed. If you are being sold simple stories about mind over matter, remember that some bodies are built in ways that no amount of journaling or visualisation can change.

I write this as one patient, with one life and one spine. I cannot speak for everyone with Bertolotti sSndrome, and I cannot offer medical advice. What I can offer is a record of a very long search and a late diagnosis, in the hope that others might find their answers earlier. May those who read this – patients, families, doctors and therapists – hesitate before saying “it is in your head” and be humble enough to admit what they do not know. A diagnosis can restore a measure of dignity, and sometimes that is the first step towards a different kind of living with pain.

I think of the cartoon at the dentist’s. I wish my entire now extremely wonky skeleton could be replaced.

My daily meditation and mindfulness sessions are now Stoic rather than Buddhist. Stoicism is a powerful discipline to deal with anything, especially pain. For now.

I am in the last phase of a PhD thesis in law. The title is Exploring Sustainable Justice. When I spoke to my supervisors, I explained my diagnosis. “For forty-eight years,” I said, “Doctors looked at my spine and did not look 3 cm to the right of it.” “This is exactly what your thesis is about,” said one of my supervisors. “The law is equally narrow-minded.”

I am also the director and financier of a small publishing agency, and decided to write and edit this book to educate medical practitioners and sufferers about Bertolotti Syndrome.

How does having Bertolotti syndrome affect my life at age 68?

- I have pain all day and am extremely lopsided

- I lie flat most of the day while working on my computer

- I swim first thing in the morning for 45 minutes; then rebound until I am out of breath, then I do 45 minutes of reformer Pilates. Without these, I go backwards quickly. I take a rest on weekends.

- I do other short bursts of activity, such as having a coffee in a café with a friend. Two hours is my absolute maximum

- Sitting is the worst, even when I use a pillow

- Walking is difficult

- My balance is not good

- Standing at the sink is nearly impossible. I often buy readymade meals from a local café

- I need help cleaning

- I need help gardening

-My hands are affected; I drop stuff. I offer Japanese tea ceremony to friends to remedy it.

- I use a walking stick

- I am often extremely fatigued

- I avoid medication as much as possible

Being a healthy sovereign means taking charge of your own health journey. It signifies a state of empowerment where you're not reliant on external experts, tests, or medications. I may change my mind and

visit another doctor. But for now, this is my way of dealing with the wicked condition I was dealt with.

The Landlords from Hell, 2026

From 2000 to 2026, I lived in Alice Springs. From 2020, I rented a small cottage at the back of a property there. In late 2025, I was finally diagnosed with Bertolotti Syndrome. By that time, the cottage had already flooded eight times during periods of rain. Alice Springs is in the desert and rainfall is infrequent, but even infrequent rain becomes a serious problem when it sends three centimetres of muddy water through a home.

The landlords attempted some repairs, but they were plainly inadequate. He described himself as a builder, yet even to me it was obvious that the drainage work was not going to solve the problem. The flooding therefore continued. At one point, sandbags were placed across the path to my front door and then left there even during dry periods. For someone living with Bertolotti Syndrome, this made access to the cottage increasingly difficult and painful.

Eventually, I asked the landlords to come to the cottage so that we could discuss the situation. I explained that the house was not safe for me, particularly in light of my diagnosis. Their response was to tell me that I should leave. They then began discussing, in front of me, how much they might increase the rent for the next tenant. At that moment, it became unmistakably clear that my wellbeing was not a consideration for them. I said that I would leave as soon as I could find suitable alternative accommodation.

A few calls to local real estate agents quickly made it clear that remaining in Alice Springs was not a realistic option. Rents were extremely high and the standard of available housing was poor. I therefore began looking elsewhere in Australia and quickly found a place in Queensland. Because I ran a remote business, I was able to work from anywhere. Relocating was the obvious decision.

I informed the landlords that I would move as soon as the flooding on the route between Alice Springs and Queensland had eased.

After that, the pressure on me increased. Although they were fully aware of my diagnosis, they engaged in passive-aggressive behaviour that seemed designed to force me out more quickly. My condition had become, for them, an inconvenience. Packing under those circumstances was extremely painful. After repeated flooding, cleaning, and mopping in an effort to keep the cottage habitable, I was already physically depleted.

Fortunately, I was not alone. I have many friends, and one of them took me into her home while I packed. She gave me something I had been lacking for some time: a sense of safety. She also provided a good mattress and wonderful meals, both of which made an enormous difference.

Her kindness stands in stark contrast to the behaviour of the landlords. For those of us living with Bertolotti Syndrome, friends like her can become essential. When housing becomes insecure and pain is constant, compassion is not a small thing.

It is often what makes endurance possible. I live in a subtropical paradise now. I swim in warm water and do

warm water exercise. I am hoping a doctor will finally listen to me. If it is not too late, I will have that operation.

© Suzanne H Visser