Fresh and Gorgeous

‘That was the day I couldn’t walk,’ she says.

Over breakfast, I had noticed a photo of my mother and brother that I hadn’t seen before, newly displayed in a frame on the dining table. I told her she looked nice, not thinking about what year it must have been. My brother looks about five years old. She tells me it was taken by my godmother – her oldest friend – on my brother’s birthday. We were all in Stanmer Park, an estate on the outskirts of Brighton. She thinks we played rounders – these are things I don’t remember at all, they are the things she has to tell me.

‘I ran,’ she says, ‘and then I couldn’t move.’

Back at our flat, she went to bed while my godmother rang her GP. ‘It was early on,’ she says. What she means is: I didn’t know how ill I was. I didn’t know I was going to be ill – on and off – for the next twenty-five years.

It is just the two of us and the dogs for Christmas. Even without my brother – who for the last eighteen months has been dropping in to see my mother twice a week, and driving her to memorial services at the care home where my grandfather lived the last months of his life, and going to all events where her LGBT choir is singing at the weekends – we are squeezed in her house amongst too much furniture on which too many things are precariously perched, and not enough working radiators. At first, I can’t bear her doing things, my patience is too limited. She won’t be helped and won’t listen when I tell her to stop and sit down. And I frustrate her. She doesn’t want to be told what to do and acts like I am telling her off. I do the same to her: I have brought my stress with me and refuse to eat enough food. It always goes like this. We have both become too used to living alone, and too riled by each other’s habits. I am too lazy, and she is not lazy enough. But after a few days, we settle. Her chest infection is clearing, but she keeps saying her legs hurt – ‘You know, in that way.’ That way means: ‘I am too tired to try and explain what I mean.’ I am too tired to explain what she means.

‘But don’t I look fresh and gorgeous,’ my mother says, looking at the photograph of herself in her early thirties, with my brother on her lap. She does look young, and gorgeous, because she is. She is tanned, her face set with a calm, smiling expression. She doesn’t look like a sick woman – at least, how they are depicted in paintings, or films, or stock images: slumped over, head in hands.

In the photograph in the park with my brother, she looks so composed. This composure was the product of innocence, of not knowing the severity of her illness, or the effects it would have on her life, but also of maintaining an appearance of wellness for her children and friend, of keeping it together. This composure masked an interior turmoil.

‘I was unravelling,’ says my mother.

This metaphor is structural more than visual. Unravelling refers to a textile that was once complete, woven, and neat, until it starts to fray. Fabric can fall into nothing if a single thread is pulled for long enough.

To unravel is also to solve something complicated. It applies when the mysterious becomes known, when the case is solved. It is how EBB described her illness, which no doctor could explain: ‘Time,’ she wrote, ‘seems to have no effect in unravelling it.’

I know what it is to unravel. I cannot imagine what it would feel like to fall apart with two children to take care of.

My mother always looked well, and that, I am sure, worked against her. She did not look as ill as so-and-so, a woman my grandparents knew, who, they told my mother, really had ME. My mother did not look as unwell as the woman on her third or fourth round of cancer treatment who we would visit quietly in her single bed in the afternoons. When she was not bedridden, she always got dressed, every day. When she was able to work, my mother was never seen to be anything other than well, as the carer rather than the cared for, as if you can only be one or the other. In the mid-1990s, when that photograph in the park was taken, she might have looked well but she was anything but.

Stays at my grandparents’ house when we were children were ‘like a test’. They would watch my mother to make sure she was doing as much as everyone else. ‘When they left me alone in the house,’ my mother tells me, ‘they would say: “don’t just sit here and call all your friends,” like I was a grumpy teenager.’ What made them think she wasn’t as ill as she claimed to be? She already had a diagnosis, from a renowned Immunologist in London, but her GP still told her ‘we were crazy’ – even though they never referred us to a psychiatrist. Did they think she didn’t look sick enough?

I, on the other hand, look sickly and pallid, and thin, dark circles, limp limbs, can’t keep head up, in photographs. I tried to do dance lessons, but they would put me in bed.

‘There was always a drama with your mother,’ my grandmother said to me once. By ‘drama’ I think she was referring to my mother’s illness, which seemed to have infected me, her child; ‘the daily drama of the body’, as Woolf put it. She was not believed, by doctors or her ex-husband, her own mother – or rather, she was believed to be ‘making a drama’ out of our situation, and ill feelings – hers and mine. She was a trained performer after all – a dancer, and a singer.

It was unfortunate that my mother has always known how to pose for photographs, to perform. When I was young, I used to come across her headshots in our family photo albums. Once she was ill, this training worked the other way. She answered the phone as if she had just woken up exhausted, whether she had or not. When able to work she posed as well, refusing to be seen to be as sick as she was. Posing as ill made her no less ill, just aware of other people’s expectations of her as either sick and therefore unable to do very much at all, like answer the phone, or well enough to work, or clean the house, or look after her children on her own – which she could not. This is how I learned that ill feelings are a kind of protection.

As a child, I lived within the boundaries my mother built, both safe and sick. These were the circumstances I found myself in: the wall I helped to build.

There was no doubt that the drama of our illness, which actually played out in bed, at home, in the dark, rather than in public, but was suddenly visible when encountered by anyone else, was specifically female in nature. Only women get called hysterical, especially mothers, or children. The assumption being they are less able to control themselves.

The names for ME/CFS are weapons used to blame sufferers, to call them lazy, not really sick, but also not well enough to work: invalid. We were visibly able to do better but refusing to do so. We were stubborn, resistant scroungers. There was nothing really wrong with us: we wanted to be ill. I knew more about the stigma around my diagnosis than the history of it. I knew it was not what you wanted to be diagnosed with. The ‘difficulty’ of diagnosing it transfers onto the person being diagnosed – they too are labelled difficult.

What does a sick woman look like anyway?

EBB’s portrait hangs next to her husband Robert Browning’s in the National Portrait Gallery ‘Early Victorians’ room. Their bulky gilt frames tilt towards each other, slightly away from everyone else: the three Brontë sisters looking decidedly unimpressed, their brother having erased himself from the group portrait; George Eliot; Charles Dickens; the leader of the Gothic movement in architecture, Augustus Pugin, and Queen Victoria’s favourite painter, Edwin Landseer. On the other side of the wood-panelled room is a bronze cast of the Browning couple’s clasped hands in a glass cabinet. It’s hard not to be immediately sceptical of such an object. They look too small to be life-size. How would you make a cast of two hands clasped together? Surely you would have to cast the two hands separately, in which case they were not holding hands at all.

The Brownings are seated in each of their portraits. Quick, messy strokes of paint describe the white lace around EBB’s sleeve cuffs and the buttons down the front of her high-neck black dress. You can’t see her hands. Her head drops slightly forward. The expression on her face says she is not at all surprised to see you. It says she has agreed to receive you, and that she would like you to leave again at some point soon, so she can rest, and work. She has puffy circles around her eyes, as if she told the painter, Michele Gordigiani, ‘Don’t bother painting them out,’ or, perhaps, ‘Try adding them in.’

Robert leans forward, his weight on his right elbow, resting on a table, or perhaps the arm of a sofa. His pose is immediately active. When I look at his face, I see hers: similar, as if they are related by blood rather than marriage. EBB also leans on her left arm, but her whole pose is stiffer, less chosen somehow, more difficult to hold, and there is something about the chair, which is as wide as it is high-backed, made of dark wood covered in an ochre fabric, and decorated with two rounded oreilles, or ears, at the top. The chair makes her look grand, like she’s sitting on a throne. It is as if her body is boxed into the furniture, propped up by the back and arm of the chair, because she’s unable to sit up for very long. When I walk around the rest of the gallery, I see that no one else has a chair like it in their portrait. The strange chair, the tired skin around her eyes, the sloping position: standing in front of the Browning portraits, I read her as sick and him as well. I am convinced this is a portrait of an ill woman, even though there is no mention of her condition in the wall text. Her profession is listed as Poet, not Invalid. Would you know she was housebound for most of her life from her portrait, if you did not know already? Maybe the chair was painted in afterwards, or it wasn’t a chair at all. Perhaps it was a bed.

How is a sick woman seen?

Harriet Hosmer, the sculptor who cast Clasped Hands of Robert and Elizabeth Barrett Browning, described EBB as well as any portrait painter: ‘The same abundant curls framing a face, plain in feature, but redeemed by wonderful dark eyes, large and loving and luminous as stars. The nose slightly disposed to upturn; the mouth, well, perhaps in this feature we discover the key to some of Mrs Browning’s less delicate verse, large, full-lipped, yet harbouring always a sweet compensating smile. Her voice, slow and with the somewhat laboured enunciation peculiar to delicate health. The manner ever gracious, with a touch of shyness at times. Small in stature and in form so fragile that the gentlest zephyr might have borne her away.’

Hosmer thought Robert stood ‘on a higher plane’, ‘fulfilling in every sense the ideal we have formed of a poet’. If Robert was energised and present, EBB was barely there at all. She was too delicate, too slow and contained, too unknowable, to be described as the ideal we have formed of a poet, and therefore more fascinating to Harriet, as a sculptor whose self-presentation and success relied on being energetic, a friend, and a woman who loved women. In 1857, at the end of a four-page letter from Robert about sick houseguests and winter weather forecasts pre-empting Harriet’s arrival in Florence for another visit, EBB added her own note to the sculptor, written in the third person, using her nickname Ba, as if to confirm the tenuousness of her physical presence in the world: ‘Ba’s best love and as Robert won’t wait, dearest Hattie, at Florence now, and Rome afterwards. E.B.B.’

It is said that Hosmer did not carve into the hands but left them precisely as they were cast: authentically theirs. Hosmer would know the difference, being welcomed first into their circle to spend time with the Brownings, and then into the intimate and time-consuming act of moulding their clasped hands herself.

At first, I thought it impossibly small, and too difficult to create the cast, to be real: a refusal on my own part, perhaps because of the general stuffiness of some of the pictures on the walls, and the power dynamic represented in such an uncommanding object. It is not just the cuffs around each of their wrists – Elizabeth’s in lace, like that around her neck in her painted portrait; Robert’s plain – that distinguish one from the other. Robert’s hand is active; his fingers clasp hers, passively laid on top of his, as if someone had just put it there. If you turned the object around in your own hands, you would not see hers at all. The body from which her hand was cast could be asleep, or dead. That hand would slip out of hers if he only loosened his grip.

How does a sick woman see herself?

Unlike her predecessor, George Sand, ‘Thou large-brained woman and large-hearted man’, Elizabeth would write as a woman. Influenced by those who came before her, she would be a poet of her own making: EBB. In 1844, after many years of suspicious treatments for her confounding ill health, there were to be no more doctors. She prescribed her own treatment of poetry, rest, warmth, sensible eating, and her beloved laudanum to help her sleep.

EBB thought herself ‘little & black like Sappho’ – who, like Hosmer, loved women – with ‘a mouth suitable to a larger personality’ and ‘a very little voice’. She described herself as a ‘blind poet’ who knew little of ‘life and man’, for which she would gladly exchange her ponderous, helpless knowledge of books for some ‘experience of life and man, for some . . .’ Her painted likeness at the National Portrait Gallery captures her entirely: uncapturable, there and not there. The personality Harriet described, EBB’s contradictions expressed in her physicality – upturned and loving, mouthy and sweet – are painted in with the dark circles around her eyes and the ornate carvings of her chair, its scale, I see now, used to show her small stature, rather than the grandness of her lodgings. I recognise myself in Harriet: invited into EBB’s life and kept at a distance; unable to completely identify, or even fully encounter her – Elizabeth Barrett Browning, Ba,

E.B.B. – as anything other than the elusive presence she created for herself.

Blamed

All the names I know for ME/CFS are derogatory: yuppie flu, mass hysteria, shirker syndrome. Most of what you read in books and articles on ME/CFS flatly condemns the experiences of millions of people. One Norwegian study suggests that people with a diagnosis of ME had an unhealthy ‘in-group’ identity based on ‘premorbid personality traits’ or behaviours, a sentiment Edward Shorter described in 1992: ‘Many patients today have acquired the unshakable belief that their symptoms represent a particular disease, a belief that remains unmarred by further medical consultation.’ Ten years later, the British Medical Journal ran a poll, which classified ME as a ‘non-disease’. We were made to think that we only had a shared belief we were ill; if we changed that belief, we would not be ill anymore.

Growing up, I did not believe I was ill. I believed that I was somehow faking illness without even meaning to, which meant that I was bad. I believed that my symptoms were not a sign there was something organically wrong with me, but that I wanted to avoid doing everything. I believed that I must not care enough. My mother and I met the criteria for nervous illness, or hysteria, visually-speaking – ‘We have observed that nervous diseases have generally been supposed to be particularly connected with the sanguineous temperament,’ wrote Sayer Walker, a physician from Essex, in the eighteenth century, surveying the various types of nervous patients, their temperaments and appearances. ‘That irritability to which they have been ascribed, is often indicated by the fine skin, the blue eye, the flaxen hair, and the large and full blood vessel.’ It is as if I had not only inherited the wrong kind of illness from my mother, but the wrong gender and the wrong temperament.

More women than men are diagnosed with ME or chronic fatigue syndrome, and more women report being abducted by aliens. Both are, according to Elaine Showalter in Hystories: Hysterical Epidemics and Modern Culture, published in 1997, incarnations of modern hysteria, along with eating disorders, hypochondria, multiple personality disorder, and Gulf War syndrome. When I first read Showalter’s book, I thought of my home, and my family, of my mother and I cloistered together; her supposed ‘hysterical’ reading of her own body, and mine, of sickness spread by suggestion, imitation, and (alternative) therapy; of our ill feelings as a shared language; of the doctors who read our ‘circumstances’ – poor, queer, female – as toxic and sick, as another symptom that needed to be relieved.

‘Shannon Tiday’s mother says her daughter has faced accusations that the condition is all in her head,’ reads one report. At the time, Sharon was a ten-year-old girl from Plymouth with a diagnosis of ME/CFS. ‘I was told maybe she is a bit of an attention seeker, maybe your daughter actually likes being ill.’ The idea that someone – a child or adult – would want to be ill to get attention, have a belief they were ill when they were not, or need to be ill in order to express their feelings, are all ways of making the person who feels ill responsible for their sickness. ‘To tell you your child likes being ill, it’s like saying your daughter doesn’t really want her childhood,’ said her mother. ‘What child would want to be ill with an illness like this?’ The well are not derided. They are not believed to be faking wellness. It is as if being well means you already have all the attention you need.

Why would you want to be ill when being ill is so much worse than being well?

The history of ME is haunted by women blamed for making their daughters ill and then caring for them too much. In 2008, Kay Gilderdale, previously a nurse, was charged and later acquitted of the attempted murder of her daughter Lynn, who had been bedridden with ME for seventeen years. Two years before Kay helped her daughter Lynn die, she was reported as saying her daughter was ‘not dead, but not alive properly’ due to her quality of life. There are documents relating to Lynn’s health online, because that’s where sick people often share their experiences, advise others, and conduct activism and advocacy. One is a letter by Kay, ‘Appeal for appropriate care’, which details Lynn’s experience with doctors, including a psychiatric consultant who insisted on treating her as an in-patient, during which time her health rapidly declined to the point that she could do nothing for herself: ‘We wanted to believe what they said so much that we held on, even when we saw her deterioration, but sixteen days after her admission, we knew we had to take her home.’ Kay provides exact dates and lists her daughter’s symptoms in medical language: muscle spasms, nausea and pain. For an appeal, the letter – asking that Lynn’s case be considered when treating severely affected ME patients – is measured and clear, rather than ‘emotional’. In her time caring for her daughter, Kay must have learned how to speak to doctors.

Extracts of Lynn’s online diary – meant to be read by a few friends – were published in the press after her death. ‘This is no whim and certainly not just because of the reactive depression diagnosed a few months ago,’ she wrote. ‘I am no longer on anti-depressants because they weren’t doing anything . . . I really, really, really want to die and have had enough of being so sick and in so much pain every second of every day and, basically, one serious health crisis after another.’ ‘My body and mind is broken . . . I have nothing left and I am spent.’ The Daily Mail called it her ‘diary of despair’. The article was illustrated with photographs of her doing ballet and sports, ‘prior to her illness’.

Mothers who care for disabled children face significantly different demands than mothers of non-disabled children. They have more interactions with medical professionals and institutions, where they are frequently in the position of trying to get appropriate treatment and services for their children. During these interactions, the mothers’ knowledge of their child will likely be ignored or discounted. The mother is expected to be completely self-sacrificing in their caregiving, and is often blamed for their children’s disabilities, for the failure of treatment programmes, and for the children’s inabilities to live independently – often an impossible ideal. ‘In short, mothers of children with disabilities are subjected to more institutionalized control, more bureaucratic monitoring, and more social judgements of the quality of their caregiving than mothers of children without disabilities,’ writes Susan Wendell in her book The Rejected Body. Such a society exploits mothers’ caregiving, demands unlimited sacrifice from them, and then blames them for giving too much care. It is as if mother-child relationships are the real disease to be afraid of.

I tried so hard to get you help.

The Worst Thing

In 1976, BBC Radio 4’s Woman’s Hour broadcast a segment on what was then termed ‘Iceland disease’ after an outbreak in Akureyri, Iceland in 1948. Dr Celia Wookey, a member of the Patients Association Iceland Disease Group, announced a survey she was undertaking, and invited people with experience of the condition to complete a questionnaire, requiring participants to indicate symptoms affecting them from a long list. This was not anonymous – participants were to include their name and contact details, with consent to contact their doctor wrapped in, and were asked to include stamps for replies from Wookey herself.

Wookey divided the symptoms between four columns, the first being what she thought of as ‘the most useful’ in diagnosing Iceland Disease: headaches, muscle pain, sensitivity to light, excessive fatigue, numbness, nausea, looking pale or ‘grey’, memory loss, insomnia, depression. The next three columns – presumably not as useful in diagnosing Iceland Disease, but common among people with the illness – contained a hodgepodge of symptoms, from abnormal bowel movements, vaginal discharge, painful joints and sore throats to more ‘emotional’ symptoms such as frequent crying, ‘cold in head’ and feelings of panic and guilt. This list of symptoms was followed by a number of questions concerning the participant’s experience of illness: the time of day when symptoms were worse, how quickly they experienced the onset of symptoms, whether they had got any better, and if any other family members were affected. When Wookey first devised the questionnaire, the symptom of ‘feeling awful’ was included in the first column – the ones most useful in diagnosing Iceland Disease – but this was subsequently removed. Although it was ‘too non-specific’, it was surprising, Wookey later remarked, ‘how many patients volunteered the information that they had never felt so awful in their lives.’ Eighty-nine per cent of participants ticked this symptom, second only to ‘excessive fatigue’, which was reported by ninety per cent of respondents.

Wookey published the data collected in these questionnaires, and more detailed case studies, in 1986. The length of illness reported ranged wildly, from one to forty-four years. Thirty-one per cent of respondents reported having become ill suddenly, with sixty-one experiencing a more gradual onset. The longer they had it, the worse the prognosis, with the longer-affected reporting less improvement. Seventeen per cent had another family member who was affected. My mother and I would have been in that seventeen per cent, and we were not the only ones for whom this commonality was considered a sign of hysteria. In one of Wookey’s case histories, a woman referred to as J.C. (‘Case History 10’) listed symptoms that were anything but ‘non-specific’. They are, unless you have felt them yourself, too specific to make sense. Each one a question that was still unanswered after many years of illness: ‘Why are certain parts of my arms so bruised and tender to touch with no bruising to show, and why if they are gently rubbed does the pain disappear for a short while? Why am I so much more emotional now than before the illness and why does my temperature rise every few weeks and chest pains last so long always on the left side and always when I’m still? Why is simply sitting perfectly still the recipe for the slow build-up of the ill head feeling that can become torture in its intensity.’

I have underlined this section in my copy of Wookey’s book because some of these symptoms are like my symptoms, and some are like my mother’s symptoms, and because, like ‘Case Study 10’, every one of our symptoms is a question, a chaos of cause and effect. Like my mother, J.C. was accused of teaching her children how to seem sick.

I too have that ill head feeling, the sensation of being punished, slowly.

J.C.’s illness began when she was thirty-five years old. As a child, she had hardly missed a day at school, and seemed to have ‘boundless energy’ as she got older. In the summer of 1972, both of her children became ill with infections and convulsions, but not with anything doctors could diagnose. After several months, the older son seemed not to recover, remaining languid, dreamy and pale, and becoming irritable, petulant and tearful. She spent her nights rubbing the back of his head, where it was tender. For many years, my mother – and whoever came to our flat to help her – did the same for me. Our experiences, two decades apart, overlap in more ways than this.

Her sons had been ill for a few months before J.C.’s strange symptoms began – pain that would not go away, tenderness at the back of the head, in the same place as her son’s, aching, tiredness and tearfulness, high temperatures. She was ‘indefinably unwell’, unable to pinpoint how. When she was cleared of cancer, and her sons found not to have epilepsy, she started to feel her GP thought she was exaggerating not only about her children but also about herself. The day she says her illness began, after several weeks of decline, she was in Devon with her family. ‘I lay there, wondering what had hit me; I felt as though I couldn’t move.’

J.C. was diagnosed with what was called ‘masked depression’ and prescribed antidepressants by a psychiatrist, but her temperature was still erratic, and she was sent to Guy’s Hospital for more testing. ‘I didn’t feel depressed,’ she said, ‘only frustrated and ill.’ She ‘wasn’t used to being disbelieved’. But what would she have been disbelieved about before?

At the hospital, she was not allowed to sleep as much as she needed to, and was made to take walks, and eat sitting up. The psychologist was certain it was a medical problem, and the medical doctor was sure it was psychological. J.C.’s mother and husband convinced the psychologist she was not mentally unwell. If not for the care of her mother and husband, she was sure she would have been forced into psychological treatment, and ‘chivvied’, causing her to be bed bound like this for life. Upon exertion, she felt excruciating pains and sudden exhaustion, ‘as though the cork from my energy bottle had been removed and life was draining away’.

Later, when she was eventually referred to a neurologist, they told her that she looked perfectly healthy and to ‘not let imaginary illnesses get you down’. The doctor playfully slapped her on the arm, which hurt, and accelerated her anger. She blindly struck out sideways, sending the neurologist reeling: ‘the culmination of anger that had been built up over the years of disbelief ‘.

Back at home and ‘surrounded by love’, but still with no diagnosis, J.C. slept for most of the day, the curtains drawn – just as my mother did. Her two children were intermittently ill, and the younger child collapsed at school. When their family GP examined him, complaining of leg and back aches, and abdominal pain, he commented that ‘of course, a child would pick up symptoms if there was illness around him’. It was suggested that J.C., as a mother, was making them ill, and the boys would be ‘better off’ at boarding school. J.C.’s account was included in the broadcast on Woman’s Hour with Dr Wookey. Exhausted and in pain, she was only able to participate having lain flat on the floor of Broadcasting House beforehand.

My mother has stories of disbelief like these, and not just from doctors – from women she knew who came to help her at home when she was bedbound early on, and my brother and I were still at primary school, women who had their own ideas about the reasons for her debilitation. A friend who cooked her dinner and then forced her to eat it sitting up at the table. The mother of a child at my school who would do my mother’s shopping and then tell her she only believed she was ill. My mother did not have a husband, or a doting mother, to care for her, to convince people she was not mentally unwell – my mother had to do that herself. These were the people she relied on, with two young children. They were almost strangers: the other parents who took me back to their houses after school; the carers who did our laundry and cooking. Like J.C., our family life was affected by illness. Despite the economic disparity between our families, J.C. was still financially hit by her inability to work; she had to sell her car, her only means of travel, and so became effectively housebound.

Once my mother was confined to her bed most days, like J.C., it was normal for me to spend most of my time at other peoples’ houses. I never had to accompany my mother to the supermarket because she couldn’t go herself. She relied on friends to do her shopping and pick her children up from school. A friend would make her dinner and then tell her to get out of bed in order to eat it. She remembers a woman who was a psychiatrist and mother of a child at my school, who was one of the most helpful people to my mother when it came to the school run and food shopping but would tell my mother that she didn’t think she was really ill, and that she just needed to ‘get up and go for a run’.

‘That would have been the worst thing for me to do,’ she says.

No One Likes Blue

As a child, my mother took me to a healer called Joan, who must have been in her seventies, or older. First, she asked me questions about how I was feeling. Then I would lie on the foldout therapy bed in the middle of her living room while she held her hands over different parts of my body, surrounded by bowls of fruit and plants that other people had exchanged for healing. Only occasionally did she touch my skin. My mother sat on a chair by the bay window. A painting of a small house in a landscape hung above the mantelpiece.

One time, Joan narrated the colours of the rainbow, guiding me and my body through the light, from red to violet. She asked me which colour was best when she was done. ‘Blue,’ I told her, hesitantly, not knowing which colour to choose. She said that was the worst colour, that no one likes blue. My mother agreed. I had got it wrong. I felt ashamed, scolded myself for not doing it right.

My mother also went to Joan for healing and had acupuncture while I was having osteopathy at the subsidized Natural Health clinic. She had chronic pain at the time – a symptom of hers that would wane during my childhood, when mine was waxing, to the extent that it felt we had very different illnesses. (Our symptom languages were not so similar after all.) While I waited for her session to finish, I would imagine what was happening to her, and whether she was covered in needles. She always looked serene when she came down the stairs.

The acupuncturist asks me what ME stands for in our first session. I tell her I cannot remember, and that it doesn’t really matter because it was a confounding diagnosis then and now. She writes down ‘History of ME’ and subsequently brings it up whenever I mention feeling tired. I can’t really talk, can barely keep myself upright. I can feel my muscles wanting to slack, to fall away from my bones. My mind is thick. I don’t want to be touched. I think: if I lie down, I will shut down.

I’m at the acupuncturist, now in my early thirties, because I don’t want to go to the doctor again. Something drew me to it, the puncturing, maybe. Finding blockages, flows obstructed, release. I thought it might be a way of engaging with the porous nature of my body – going beyond touch, and, of course, verbal language. Making proper holes. Acupuncture puts your body in the world, but it also links you up with something else – a constant notation of constellations and elements, cycles and rhythms beyond it. Going was my attempt to seek help for pain – for someone to witness it, to measure it in my body somehow. To pay attention to it.

I expected the pain to be all in my skin, but it was in more than that.

The acupuncturist tells me I have Raynaud’s Syndrome. She noticed how the blood drains from my fingers sometimes. ‘You didn’t know it had a name, did you?’ she says, and I smile, weakly, knowing just because something has a name doesn’t mean anyone thinks it’s real.

Cold temperatures, anxiety or stress triggers Raynaud’s. The condition occurs because your blood vessels go into a temporary spasm, which blocks the flow of blood. Google searches for ‘blood drains from my fingers’ give up fibromyalgia studies and links to autoimmune conditions (while it can be idiopathic – primary Raynaud’s – it can also predict the onset of diseases like Lupus, MS, Lyme disease, and other connective tissue disorders). Apparently, Raynaud’s is slightly more common in women than men. It also appears on the list of ‘testable abnormalities in the absence of any single organic cause’, as part of Dr Byron Hyde’s definition of ME, alongside sleep dysfunction and Ehlors-Danlos Syndrome, as well as SPECT, MRI and PET brain scans, immune system tests, and circulating blood volume tests. Blood vessels that go into temporary spasm are another kind of failure, a blockage, and an indicator of maybe something, maybe nothing. I am a collector of syndromes, which are in themselves collections – the process of grouping and managing. Everything seems related when you don’t understand what’s going on.

My grandmother once said my hands were worse than hers. I had just gone for a swim in the sea in Norfolk and they looked like a dead person’s hands. This was several years after she had a stroke. She put her hands around mine and rubbed. Trying to get the blood going again, the blood that flows down through the generations of my family.

What else have we inherited?

The acupuncturist takes my pulses, looks at my tongue, and presses her fingers into the flesh across my abdomen. She does my astrological chart without telling me anything about it, uttering words and names like ‘metal’ and ‘rabbit’, all the ways I am connected to the cosmos, noting the parts we have in common. She chooses her locations; the needles go in. A sharp pain in my toe falls off into numbness. One goes in my forehead, and some more in my leg and arm (the right side, ‘because you are a woman’). She says the needles go in easy with me. I told her they never did when they were taking my blood as a child. ‘I’m trying to avoid the veins,’ she explains.

A pulse keeps time. Measuring it keeps track of your health – compared to what is considered ‘healthy’. Too low and you risk not getting enough oxygen to your organs. Too high and it is racing. When you go to acupuncture, you have six pulses where you thought you had one. They can be thin or thready or loose. The six relate to your organs, not just your heart, the radial thud of your living body. Deeper still and your qi can be measured.

I kept going back for that deeper measurement. She would measure them all again at the end of the session – once I had lain there for twenty minutes in the dim light – to make sure her needling had worked, this white woman versed in Chinese medicine who thought my antidepressant medication was ‘really strong’, and was then worried when I stopped. That was a danger signal, apparently. Would I even know if my body was in danger? Would I even know what the signals meant? Would she? When I next see the acupuncturist, my pulses are stronger. I ask her if they are always different, for everybody, every time, and she said that they are.

‘It’s a different day,’ she says. ‘You’ve been bleeding.’ She tells me Princess Diana died the same day nineteen years ago.

The acupuncturist is still worried that I had abruptly stopped taking my medication. I said: I am better than the first time I came, remember, when I could barely keep my eyes open, or speak, even if I am feeling a bit tired today.

‘Well,’ she said, ‘you do have a history of ME.’

I lie on my back on the acupuncture table and try to imagine my body from her perspective – hovering above myself. A needle goes into my right ankle to ‘help with concentration’, sending an electric shock into the sole of my foot.

In Virginia Woolf’s 1921 story-poem ‘Blue & Green’, she appears to be looking at a green glass object. The light that slides down it during the daytime and pools on the surface below. The effect makes her think of parakeets, and the sounds they make, and then palm trees and their needles ‘glittering in the sun’. The light becomes pools of water that ‘settle on the marble’ as the earth turns; ‘rushes edge them; weeds clog them; here and there a white blossom; the frog flops over; at night the stars are set there unbroken’. And then evening comes and green turns to blue.

The blue is darker because it is night. She sees a ‘snub-nosed monster’ in the water, and then on the beach, ‘blunt, obtuse, shedding dry blue scales’; a wrecked rowing boat with blue ribs, and the ‘blue veils of madonnas’ in the waves. Her mind leads her, and us, away from the domestic space of objects and hard surfaces to water, to the sea, and then directly into the colour blue, transcending all objects and associations entirely. We can’t go with her, totally, but we can go on our own journeys in our minds, lying down horizontal, or sitting up in bed.

Woolf leaves the material reality of objects and rooms behind, guided through associations and emotions by an awareness of colour and light itself, to somewhere outside of everything known – like I was guided by Joan. The same could be said for the experience of pain: a physical sensation that extends to the other senses and other realms beyond our grasp, that is nevertheless integral to ordinary life. There is no doing it right.

Maybe blue was the best colour after all.

Image © Matisses

This is an excerpt from Ill Feelings by Alice Hattrick is forthcoming with Fitzcarraldo Editions.