UnTouchableConditions
A diagnosis can feel like it has only ever happened to you. It has not. Here is what each condition is, in plain English, and the people who have talked about living with it.
All conditions
ADHD
ADHD — attention deficit hyperactivity disorder — is a condition where the brain works differently to most people's. It shows up as inattention (easily distracted, forgetful, hard to organise time), hyperactivity (restless, full of energy, talkative), and impulsivity (deciding in a hurry). Most people have some of both. It is thought to be recognised less often in women than in men, because women more often have the inattentive traits, which are harder to spot than the hyperactive ones — which is part of why so many people are diagnosed as adults. Diagnosis is made by a specialist, who looks at your history including childhood, and how it affects work, study, family and health. See a GP if it is affecting your studies, your work or your relationships. Support ranges from changes to sleep, exercise and diet, and reasonable adjustments at work, to medicines and talking therapies.
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Alcohol use disorder
Alcohol use disorder — sometimes called alcoholism — means drinking in a way that is harming you. The NHS describes the signs as things like regularly drinking more than you meant to, wanting to stop and finding you cannot, feeling guilty afterwards, other people being worried about it, carrying on although it is causing problems, wanting a drink in the morning, needing more than you used to for the same effect, and feeling unwell when you cut down. **It can be very dangerous to stop suddenly if you are dependent on alcohol.** Withdrawal usually begins within six to twelve hours and can mean anxiety, sleeplessness, shaking, hallucinations and seizures, and it can need emergency care. Talk to a GP rather than stopping on your own. Treatment and support exist and they work differently for different people: talking therapy, medical help to get through withdrawal safely, medicines that reduce cravings, and help with the things around it — work, housing, family. Alcoholics Anonymous, SMART Recovery, Al-Anon, Adfam and Alcohol Change UK are all free.
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BRCA1 gene change
BRCA1 is a gene that normally helps protect against breast and ovarian cancer. Some people inherit an altered version of it, and that altered version can be passed on by either parent, to a son or a daughter. Breast Cancer Now puts the lifetime risk of breast cancer for a woman with an altered BRCA1 gene at roughly 65 to 79 in 100, against about 14 in 100 for women generally, and the risk of ovarian cancer at roughly 40 to 60 in 100, against about 2 in 100. Having the altered gene does not mean someone will definitely get cancer. In the UK, testing is arranged through NHS genetics services, usually with genetic counselling, for people whose family history suggests it; a result can be positive, negative, or a change whose meaning is not yet known. People found to have an altered gene are offered options that may include regular breast screening, medicines that lower risk, and risk-reducing surgery. Sources: Breast Cancer Now, 'Genetic testing for altered breast cancer genes', and the NHS page on breast cancer in women.
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Brain aneurysm
A brain aneurysm is a swelling in a blood vessel in the brain. Most are small, cause nothing at all and are never noticed; some are found by chance during a scan for something else. A larger one can cause headaches, pain above or around an eye, changes to vision, numbness or weakness in the face, dizziness or problems with memory. The danger is that an aneurysm bursts. When one does it bleeds into the space around the brain — a subarachnoid haemorrhage, which is a type of stroke. The sign is a sudden, extremely painful headache that does not go away, sometimes with drooping on one side of the face, weakness or numbness down one side, slurred or confused speech, or loss of sight. The NHS says to call 999 for any of those. Smoking, high blood pressure, a family history and some inherited conditions all raise the risk of having one. An aneurysm that has not burst and is small may simply be watched with regular scans. Where treatment is needed there are two routes: endovascular surgery, where coils or a fine wire mesh are passed up through a blood vessel to block the flow into the aneurysm, or open surgery to place a small metal clip across it.
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Brain tumour
A brain tumour is a growth of cells in the brain that multiplies in an abnormal, uncontrollable way. Tumours are graded 1 to 4. Low grade — 1 and 2 — means non-cancerous: they grow slowly and rarely come back once treated. High grade — 3 and 4 — means cancerous, and more likely to return. A cancerous tumour is called primary if it started in the brain, and secondary if it spread there from somewhere else in the body; those are different situations with different treatment and outlook. Symptoms can include headaches, seizures, feeling or being sick that does not go away, drowsiness, changes in memory or personality, weakness on one side, and problems with vision or speech. See a GP if you have a headache that feels different from the ones you usually get, or if headaches are getting worse. Treatment can involve steroids to reduce swelling, surgery, radiotherapy and chemotherapy, and people with non-cancerous tumours often recover fully.
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Breast cancer
Breast cancer is the most common cancer in the UK. See a GP if you notice a lump or swelling in your breast, chest or armpit, or any change in your breasts or nipples that is not normal for you. Other changes to get looked at are dimpling or a change in the colour of the skin, a change in the size or shape of one or both breasts, discharge from a nipple, or a nipple that has turned inwards or developed a rash. Pain on its own is not usually a symptom. These things are very common and are often caused by something other than cancer, but finding cancer early may mean it is easier to treat. It is usually treated with some combination of surgery, radiotherapy, chemotherapy and hormone therapy, and most people diagnosed with it are alive ten years later. Treatment is long, and the effects of it often carry on well after it finishes.
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Colloid cyst
A colloid cyst is a rare, non-cancerous growth in the brain, filled with a thick jelly-like fluid. It sits in the middle of the brain, in or near the third ventricle. Most people who have one have no symptoms at all, and many are found by accident while doctors are looking for something else. Where symptoms do appear it is usually because the cyst is blocking the flow of fluid around the brain, causing a build-up called hydrocephalus — headaches, dizziness, sickness, problems with memory or vision. They grow very slowly. A small cyst causing no trouble may simply be watched with regular scans; one that has grown or is causing symptoms may be removed, and the outlook after complete removal is very good.
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Depression
Depression is more than feeling low for a few days. It can affect sleep, appetite, concentration and the ability to do ordinary things, and it can last for weeks or months. It is common, and it is treatable — usually with talking therapy, medication, or both.
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Drug addiction
Becoming dependent on a drug is not a failure of character, and it happens to people who were given something by a doctor as well as to people who were not. Help exists and you do not have to earn it. A GP is a good place to start, but you do not have to go through one — you can approach your local drug treatment service yourself. FRANK (0300 123 6600) can help you find services near you, at any hour. What treatment looks like varies: talking therapies such as cognitive behavioural therapy, substitute medicines such as methadone for people dependent on opioids, detox, self-help groups, and harm-reduction services including testing for hepatitis and HIV. It can happen at home or as a residential stay.
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Encephalitis
Encephalitis is inflammation of the brain. It is uncommon, it is serious, and it needs hospital treatment straight away. It is usually caused by an infection — often a virus — or by the immune system mistakenly attacking the brain. It can begin like flu and go on to cause confusion, seizures, changes in personality or speech, weakness, or loss of consciousness. Some people recover fully, though recovery is often slow. Many are left with lasting effects such as memory loss, seizures, fatigue, or changes in concentration and behaviour, which affect families as well as the person themselves.
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Endometriosis
Endometriosis is where cells similar to the ones lining the womb grow somewhere else in the body — most often around the ovaries, the fallopian tubes and the pelvis, and sometimes on the bladder or the bowel. It can cause severe period pain and heavy bleeding, pain in the lower tummy or back at other times of the month, pain when going to the toilet, pain during or after sex, and exhaustion. It can make it harder to get pregnant, and living with it is linked with depression and anxiety. It is diagnosed in women and girls from the time periods start through to the menopause, and can affect anyone who has a womb. The NHS is plain that it can take a long time to identify, because the symptoms overlap with several other conditions and several different tests may be needed: an examination, blood tests, an ultrasound or MRI scan, and sometimes a laparoscopy — a camera passed through a small cut in the tummy — which is the test that can confirm it. There is no cure. Painkillers, hormone treatments and surgery to remove the tissue are used to manage it, alongside support with fertility, pain and mental health. The NHS says to see a GP if you think you might have endometriosis, if your symptoms are affecting your everyday life, work or relationships, or if treatment from a GP has not helped.
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Fibromyalgia
Fibromyalgia is a long-term condition that causes pain all over the body. Alongside the pain, people often have a heightened sensitivity to pain, stiff muscles, sleep that does not refresh, and the exhaustion that follows. Many describe 'fibro fog' — trouble concentrating and remembering. Headaches, irritable bowel syndrome and low mood are common too, and symptoms come and go unpredictably. The cause is not known. Research points to differences in the way the nervous system handles pain signals, genes may play a part, and symptoms often start after something physical or emotional such as an injury, an infection or a period of stress. There is no single test for it and the symptoms look like those of other conditions, so it can take a long time to reach a diagnosis. It is more common in women and usually begins between 25 and 55, though anyone can get it. There is no cure. Treatment usually combines exercise and relaxation, talking therapies, and medicines. Fibromyalgia Action UK offers information and a helpline. The NHS says to see a GP if you think you have fibromyalgia. Source: the NHS page on fibromyalgia.
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Frontotemporal dementia
Frontotemporal dementia is an uncommon form of dementia that damages the front and sides of the brain — the parts involved in personality, behaviour, language and planning. Unlike most dementias it usually starts younger, often between 45 and 65, and it is the most common form of dementia in people under 60. Memory is often unaffected at first. What changes instead is behaviour — acting out of character, losing motivation, losing the ability to read how other people feel — or language: speaking slowly, struggling to find words or to put them in order. Later there can be problems with concentration, with movement and with swallowing, and memory can be affected too. It is caused by a build-up of abnormal proteins inside brain cells, and it sometimes runs in families. Diagnosis usually involves tests of thinking and memory, blood tests and a brain scan, and it can take a long time to reach. There is no cure and no treatment that slows it down. Care is about managing symptoms and supporting the person and the people around them, through medicines for some symptoms, speech and language therapy, physiotherapy, memory cafés and support groups. It gets worse over time, and people live on average around eight to ten years after diagnosis, though that varies a great deal.
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HIV
HIV is a virus that weakens the immune system. There is no cure, but with treatment most people live long, healthy lives. AIDS — now usually called late-stage or advanced HIV — is a group of serious illnesses caused by the virus, and most people on treatment in the UK never develop it. Two things are worth saying plainly, because stigma has outlived the facts. HIV treatment works: it aims to make the amount of virus in the blood undetectable, usually within six months, and **someone on effective treatment with an undetectable viral load cannot pass HIV on to anyone else**. And you cannot catch HIV from kissing, hugging, shaking hands, or from sharing a toilet seat, food, drink or ordinary household things. It is passed on through unprotected sex, by sharing needles or sex toys, and from mother to baby in pregnancy or birth. Some people get a flu-like illness two to six weeks after infection — sore throat, fever, swollen glands, aching muscles, a rash — and many have no symptoms for years, which is why testing matters. A test uses saliva or blood, and results come back within days at a clinic, or minutes with a home kit.
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Hodgkin lymphoma
Hodgkin lymphoma is an uncommon cancer of the lymphocytes — the white blood cells that help you fight infection. The most common first sign is a painless lump or swelling, usually in the neck, armpit or groin. Other symptoms can include itchy skin, night sweats, a high temperature, shortness of breath, sudden weight loss, and pain in the glands after drinking alcohol. These are far more often caused by something else, but see a GP if you have them: the earlier Hodgkin lymphoma is found, the better treatment tends to work.
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Kidney transplant
A kidney transplant is an operation to place a working kidney from a donor into someone whose own kidneys have failed, as an alternative to dialysis. Kidneys are the organ most often transplanted in the UK. They come either from someone who has died or from a living donor, who is often a relative or a friend. Transplants are carried out at 24 transplant centres around the UK, and donated kidneys are offered to matched recipients on the waiting list. Afterwards a person takes medicines for the rest of their life to stop the body rejecting the new kidney, and is supported to get back to normal activity, to look after their physical and emotional health, and to recognise the warning signs of problems. NHS Blood and Transplant recorded 2,868 adult kidney transplants in the UK in 2021/22. Source: NHS Blood and Transplant, 'Kidney transplantation'.
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Lupus
Lupus, or systemic lupus erythematosus, is a long-term condition in which the immune system attacks the body's own tissues. The main symptoms are joint and muscle pain, very heavy tiredness and rashes, often across the nose and cheeks and often brought on by sunlight. People may also have headaches, mouth ulcers, a high temperature, hair loss, and fingers and toes that go cold and change colour. It is more common in women, and more common in people of African, Caribbean or Asian family background. It is not contagious. It is diagnosed with blood tests that look for particular antibodies, and people are monitored with blood and urine tests, the urine tests checking for problems with the kidneys, which lupus can affect. There is no cure, but treatment helps: anti-inflammatory medicines, hydroxychloroquine, steroids and, for more severe disease, medicines that damp down the immune system. The NHS says to see a GP if you often get symptoms of lupus. Source: the NHS page on lupus.
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Lyme disease
Lyme disease is an infection you can catch from the bite of an infected tick. Ticks live in grassy and wooded places all over the UK and are more common in parts of southern England and the Scottish Highlands; not all of them carry the bacteria. The first sign is often a circular or oval rash spreading out from the bite, usually within one to four weeks but sometimes as late as three months, and it can be harder to see on brown and black skin. Not everyone gets a rash. Other early symptoms feel like flu — a high temperature, headache, aching muscles and joints, and tiredness. It is treated with antibiotics, and the earlier treatment starts the better it usually works. Most people get better, although it can take months to feel well. Left untreated it can go on to affect the joints, the nerves and the heart, and cause problems with memory and concentration. Some people still have symptoms after treatment, and there is no agreed way of treating those.
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Menopause and perimenopause
Menopause is when your periods stop for good because your hormone levels have fallen. Perimenopause is the run-up to it, when hormones have started changing but periods have not yet stopped. It usually happens between 45 and 55, though it can be earlier. The symptoms are wider than most people expect, and they are not only physical. Low mood, mood swings or depression, anxiety and irritability, and problems with memory or concentration are all on the NHS list — alongside hot flushes, night sweats, palpitations, disturbed sleep, vaginal dryness or discomfort, pain during sex, more urinary infections, incontinence, weight gain around the middle, weakening bones, headaches and migraines, aching muscles and joints, thinning hair, dry skin, lower sex drive, and dental problems. Symptoms usually last around seven to nine years, sometimes longer, and change over time. Treatments include HRT. How long to take it, and when to review it, is a conversation to have with a GP rather than something to settle from a number you heard somewhere.
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Motor neurone disease
Motor neurone disease is a group of conditions in which the nerves that control movement progressively stop working, causing muscle weakness over months or years. Amyotrophic lateral sclerosis — ALS, sometimes called Lou Gehrig's disease — is the most common of the four main types. Early signs can be stiff or weak hands, weak legs, or muscle twitches; as it progresses it can affect breathing, swallowing and speech. It usually affects people over 50, though adults of any age can develop it. There is currently no cure, and it is usually life-shortening. Treatment focuses on managing symptoms and on support — medicines such as riluzole, physiotherapy, help with eating, mobility and communication, and talking therapy — from a team who see you every two to three months.
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Multiple sclerosis
Multiple sclerosis affects the brain and spinal cord. Symptoms vary widely and can include extreme tiredness, problems with vision or balance, numbness or tingling, muscle stiffness or spasms, trouble with bladder control, and difficulties with thinking or memory. There are three main types: relapsing remitting, where symptoms flare and then settle; secondary progressive; and primary progressive, which worsens gradually without remission. It usually starts between 20 and 50 and is more common in women. There is currently no cure, but treatment often helps — disease-modifying therapies to reduce relapses, steroids, muscle relaxants and pain relief, alongside physiotherapy and other support.
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Parkinson's disease
Parkinson's disease is a condition in which parts of the brain are gradually damaged over many years. Nerve cells in one area of the brain are lost, which lowers levels of dopamine, a chemical involved in controlling movement. The main symptoms are shaking that a person cannot control, slower movement and stiff muscles. People may also have depression or anxiety, problems with balance, loss of smell, trouble sleeping and problems with memory. Most people develop symptoms after 50, but some do so before 40, and it is slightly more common in men. There is no cure. Treatment can include physiotherapy, occupational therapy, medicines and, for some people, brain surgery, and someone in the early stages may simply be monitored for a while. With modern treatment most people have a normal or near-normal life expectancy, though how much it affects a person varies a great deal. The NHS says to see a GP if you are worried you may have symptoms of Parkinson's disease. Source: the NHS page on Parkinson's disease.
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Post-traumatic stress disorder
Post-traumatic stress disorder is a mental health condition caused by events that were very frightening, stressful or distressing — being in or witnessing an accident or an assault, abuse, a serious illness, war, or work that exposes someone to those things repeatedly. The main symptom is the event coming back: flashbacks, intrusive images, nightmares. People may also avoid reminders of it, have gaps in their memory, think badly of themselves, struggle in relationships, feel constantly on edge, sleep poorly, or have physical pain with no obvious cause. Symptoms can begin straight away, or many months or even years later. See a GP if you think you may have PTSD, or if treatment you are already having is not working. Treatments include trauma-focused cognitive behavioural therapy, EMDR, and antidepressants.
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Postnatal depression
Postnatal depression is depression that comes after having a baby. It is common, and it usually gets better with treatment. It can start during pregnancy, straight after the birth, or at any point in the first year, and it is not the same as the baby blues, which normally pass within a couple of weeks. It can bring low mood, losing interest in things you used to enjoy, feeling hopeless or guilty, anxiety, trouble sleeping even when there is a chance to sleep, and trouble concentrating. Some people find it hard to bond with their baby. Some have frightening thoughts about harming themselves or the baby; those thoughts are a symptom of the illness, and they are a reason to ask for help rather than a reason to keep quiet. Asking for help very rarely leads to a baby being taken away — the support exists to help you look after your baby. Fathers and partners can become depressed after a baby arrives too. A GP, midwife or health visitor is a good place to start, and anyone aged 18 or over can refer themselves to NHS talking therapies. It is usually treated with talking therapy such as cognitive behavioural therapy, with antidepressants, or with both.
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Postural tachycardia syndrome (PoTS)
Postural tachycardia syndrome, usually shortened to PoTS, is when your heart rate rises sharply after you stand up from sitting or lying down, and stays up. It often makes people dizzy or lightheaded. It can also cause palpitations, chest pain, breathlessness, sweating, fainting, headaches, stomach and bowel problems, changes in vision, and trouble concentrating that many people call brain fog. It is more common in people who have long COVID, chronic fatigue syndrome, or hypermobile joints. Heat, standing for a long time, dehydration, alcohol, large meals high in carbohydrate and periods can all make symptoms worse. A GP can begin by measuring your heart rate and blood pressure lying down and then standing up. Blood tests, an ECG and a referral for further heart and blood pressure monitoring may follow. There is no cure, but PoTS can be managed. The NHS describes drinking more fluid, eating smaller meals with less carbohydrate, and compression clothing, with medicines such as fludrocortisone or beta blockers for some people.
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Pre-eclampsia
Pre-eclampsia is a condition of pregnancy that causes high blood pressure. It usually starts from about 20 weeks, though it can begin earlier, or in the days and weeks after the birth. The first signs are usually high blood pressure and protein in your urine — things found at a routine antenatal appointment rather than things you notice yourself, which is much of why those appointments matter. Get medical advice straight away if you have a severe headache that painkillers do not touch, problems with your vision such as blurring or flashing lights, pain just below the ribs, sudden swelling of the face, hands or feet, persistent heartburn, vomiting, or you simply feel very unwell. Risk is higher in a first pregnancy, over 40, with diabetes, existing high blood pressure, kidney disease or an autoimmune condition, if you are Black or South Asian, if you are carrying more than one baby, if it runs in your family, if you have had pre-eclampsia before, or if there is a gap of ten years or more since your last pregnancy. There is no cure. Medicines can lower blood pressure and prevent seizures, and the condition usually settles after the birth, so delivering early is often recommended. Left untreated it can be serious for both mother and baby.
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Sexual abuse and sexual assault
This is not an illness, and there is nothing to diagnose. It is here because it happened to people, it affects their health for a long time afterwards, and there is help — including, and especially, for something that happened years ago. You do not have to report anything to the police to get support. Sexual Assault Referral Centres are NHS services offering medical care and practical help, and they are for everyone, whatever your gender or age, and whenever it happened. Rape Crisis runs a free support line day and night on 0808 500 2222, with an online chat, for anyone affected by rape or sexual abuse — recently or a long time ago — including people who are not sure how to describe what happened. If you are worried about a child now, the NSPCC helpline is there for adults who need to talk it through.
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Sjögren's syndrome
Sjögren's syndrome is a long-term condition in which the immune system attacks the glands that make the body's fluids, so they stop working properly. The effects people know it for are dry eyes and a dry mouth, but it also commonly brings aching muscles and joints and extreme tiredness, and it can cause a persistent cough, a hoarse voice and swollen salivary glands. More women have it than men. It varies a great deal: for some people the dryness is mild, for others it shapes the whole day. Why the immune system behaves this way is not known — genes, hormones and an infection acting as a trigger have all been suggested. There is no cure. Treatment is aimed at the symptoms: medicines to keep the eyes and mouth moist, to reduce inflammation, to help with pain, and in some cases to damp down the immune system, alongside practical things like drinking often, careful dental care, protecting the eyes and staying out of dry or smoky air. The NHS says most people with Sjögren's syndrome live into old age with the same life expectancy as anyone else, though it is linked with other problems including arthritis, depression and, rarely, non-Hodgkin lymphoma. Its advice is to see a GP if you have symptoms of Sjögren's syndrome and they are affecting your daily life.
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Stiff-person syndrome
Stiff-person syndrome is a rare neurological condition in which the muscles of the torso, arms and legs become stiff, and noise, touch or emotional distress can set off painful spasms. It is thought to be autoimmune — the immune system attacking healthy cells by mistake — and it is progressive, meaning it gets worse over time. It can affect one part of the body or spread widely. Over time some people develop a hunched posture, and some become unable to walk safely because spasms and unreliable reflexes cause falls. Many become afraid to go out, because something as ordinary as a car horn can trigger a spasm. It affects about twice as many women as men, and usually begins between 20 and 60, most often in someone's thirties or forties.
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Supraventricular tachycardia (SVT)
In supraventricular tachycardia the heart suddenly beats much faster than normal — over 100 beats a minute — because of a fault in its electrical system. The main symptom is that racing heartbeat; some people also feel chest discomfort, weakness, breathlessness, dizziness or tiredness. An episode usually lasts a few minutes, though it can go on for hours, and people differ enormously in how often they happen: several times a day for one person, once a year for another. Caffeine, alcohol or drugs can set one off, but often there is no trigger at all. Call 999 if an episode lasts longer than usual, or comes with breathlessness, chest pain or fainting. See a GP if your heart keeps racing like this. It is usually diagnosed with an ECG. Treatments include medicines, cardioversion — a controlled electric shock — and catheter ablation, where thin tubes are passed through a vein or artery to the part of the heart causing the problem and heat or freezing is used to correct it. Ablation permanently cures the problem for most people.
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Tinnitus
Tinnitus is hearing a noise that is not coming from anywhere outside you. People describe ringing, buzzing, whooshing, humming, hissing, throbbing, and sometimes music or singing, in one ear, both ears, or the head. It is usually not a sign of anything serious, and it sometimes settles on its own. It can come alongside hearing loss, Ménière's disease, anxiety or depression, some other conditions, and some medicines. See a GP if it keeps happening, is getting worse, or is affecting your sleep, concentration or mental health — and urgently if it beats in time with your heartbeat. Support ranges from sound therapy and sleep and relaxation habits to tinnitus counselling, cognitive behavioural therapy, retraining therapy and hearing aids where there is hearing loss.
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Type 2 diabetes
In type 2 diabetes the body either does not make enough insulin or cannot use it properly, so the amount of sugar in the blood becomes too high. It is a long-term condition managed day to day, through some combination of food, movement, medicine and regular checks.
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