Hidden and fluctuating conditions.

What these conditions often share

• Disbelief: from doctors, employers, family, and sometimes therapists.
• Disclosure: constantly deciding who to tell, and how much. You don’t have to tell a therapist your diagnosis to get adjustments.
• Unpredictability: flares, crises and bad weeks that arrive without warning.
• Hidden work: treatments, appointments, monitoring and recovery that take hours nobody sees.
• Fear about the future: worsening, recurrence, or a test result.

Adjustments that help across conditions

• Cancelling on the day without a fee when the condition flares
• Switching between in-person, video and phone at short notice
• Shorter sessions, or a break in the middle
• Easy access to a toilet, water and somewhere to lie down or put feet up
• Not having to prove a symptom before it’s taken seriously

See also: Spoon Budget · Body Weather · Accessibility & Therapy

Cystic fibrosis

What it can mean in therapy

Airway clearance, nebulisers and other treatments can take hours every day. Hospital stays for IV antibiotics interrupt work, study and therapy. Because people with CF can pass infections to each other, they are advised not to meet in person (Cystic Fibrosis Trust), so peer support is mostly online, and loneliness can be part of the story. Newer treatments have changed life expectancy for many people, which can bring its own adjustment: planning for a future that once seemed unlikely.

What might help

• Online sessions, or a well-ventilated room with no other clients waiting
• Session times that fit around treatment routines
• Keeping the place in therapy during hospital stays, with phone or video from the ward if wanted

HIV

What it can mean in therapy

With effective treatment, HIV is a long-term condition, and people with an undetectable viral load can’t pass it on through sex (often called U=U). Stigma is often harder to live with than the virus: fear of disclosure, past rejection, and for some, grief carried from the years before treatment, or from the community losses of that time.

What might help

• Clear agreements about confidentiality, including what goes in notes
• Not needing to disclose HIV status at all to get therapy
• A therapist who has checked their own assumptions and is up to date on treatment

Endometriosis

What it can mean in therapy

Pain can be severe and linked to the menstrual cycle, or constant. In the UK, people wait on average almost nine years for a diagnosis (Endometriosis UK, 2024), often after being told their pain is normal or “in their head”. That history of being dismissed can be as much a part of therapy as the pain itself. Fertility, sex and relationships may also be affected.

What might help

• Planning sessions around predictable bad days, if the person wants to
• Taking reports of pain at face value
• Room to talk about anger at being dismissed without it being treated as the problem

Sickle cell disease

What it can mean in therapy

Sickle cell can cause sudden, severe pain crises, fatigue and hospital admissions. In Ireland and the UK it mostly affects people of African, Caribbean, Middle Eastern and South Asian heritage. A 2021 UK parliamentary inquiry, No One’s Listening, found serious failings in care, including patients being disbelieved about pain and racist attitudes. Therapy needs to recognise that racism and disability can arrive together.

What might help

• Cancellation without penalty during a crisis
• A therapist who doesn’t look for psychological causes of pain first
• Space to talk about racism in healthcare, if the person wants to

Fictional example

Kemi, 31, has sickle cell. After a crisis, she tells her therapist that the A&E doctor treated her as if she were after drugs. Her therapist doesn’t ask whether she might have misread it. She says, “That sounds frightening, and it happens to a lot of people with sickle cell. What do you want to do with it?” Kemi decides to write a short letter for her hospital file about how she wants pain managed, and her therapist helps her draft it.

Crohn’s disease and ulcerative colitis (IBD)

What it can mean in therapy

Flares can bring urgency, pain and exhaustion, and planning life around toilet access is tiring and often embarrassing to explain. Steroid treatment can affect mood and sleep. Some people have a stoma, which can change how they feel about their body and about intimacy.

What might help

• Knowing where the toilet is, and being able to leave mid-session without explaining
• Video or phone sessions during flares
• Not reading medication-related mood changes as purely psychological

Diabetes

What it can mean in therapy

Type 1 diabetes involves constant decisions: checking glucose, counting carbohydrates, adjusting insulin. Many people experience “diabetes distress”, the emotional weight of managing it all the time. People with type 2 often face blame and assumptions about lifestyle. A low blood sugar (hypo) can look like anxiety, irritability or confusion.

What might help

• Being able to check glucose, eat or drink during a session, without comment
• Pausing the session if a hypo starts, and not interpreting it as emotional
• A therapist who doesn’t moralise about food or weight

POTS (postural tachycardia syndrome)

What it can mean in therapy

Standing up, or even sitting upright for long, can cause a racing heart, dizziness, brain fog and exhaustion. It’s often dismissed as anxiety, which can make people wary of therapy.

What might help

• Permission to lie down, recline or put feet up, including on camera
• Water or salty snacks to hand, if that’s part of the person’s plan
• Not assuming a racing heart means panic

Cancer, during and after treatment

What it can mean in therapy

Treatment can bring fatigue, nausea and “chemo brain”: trouble with memory and concentration. Some treatments affect immunity. After treatment ends, people are often expected to be “back to normal”, while living with fear of recurrence, anxiety before scans, and lasting effects. Some people with cancer don’t think of themselves as disabled; others do.

What might help

• Online sessions when immunity is low
• Shorter or less frequent sessions during treatment, with no pressure to “make progress”
• Written notes if concentration is affected
• Letting the person decide whether to talk about the illness or about everything else

Functional neurological disorder (FND)

What it can mean in therapy

FND is a common and genuine condition: a problem with how the nervous system sends and receives signals, which can cause seizures, weakness, tremor or difficulty walking. People with FND are often told it’s “all in their head”. Psychological therapy can be part of treatment, but referral to therapy can feel like proof that nobody believes them. A good therapist makes clear that the symptoms are real.

What might help

• A therapist who understands FND, and says plainly that it is not imagined
• Agreeing in advance what to do if a seizure happens in a session
• Working alongside physiotherapy or neurology, with the person’s consent

See epistemic injustice and diagnostic overshadowing.

Huntington’s disease

What it can mean in therapy

Huntington’s is inherited: each child of a parent with the gene has a 50% chance of inheriting it. Symptoms usually begin in adulthood and affect movement, thinking and mood, and they progress over time. Many people grow up watching a parent become ill, and then face their own decision about whether to have a predictive test. Some choose not to know. That choice deserves respect either way.

What might help

• A therapist who doesn’t push towards testing or away from it
• Room for grief that starts before illness does
• As the condition progresses: shorter sessions, more time to speak, and planning ahead while communication is easier

Fictional example

Fiachra is 27. His mother has Huntington’s. He has spent a year deciding whether to be tested. His therapist doesn’t steer him. They use the Crip Time Timeline to look at the life he wants, with and without knowing. He decides to wait, for now, and to tell his girlfriend about the risk.

Parkinson’s

What it can mean in therapy

Parkinson’s is often thought of as a tremor, but many of its effects are hidden. People describe “off” periods, when medication wears off between doses and movement, mood, memory and motivation change, sometimes within minutes, and say these are hard to put into words (Michael J. Fox Foundation). Apathy, low mood and anxiety are common parts of the condition. One woman describes years of feeling unlike herself, being told her blood tests were normal, and an inner voice blaming her for not caring (Parkinson’s UK). Reduced facial expression can make people look flat when they aren’t.

What might help

• Sessions timed for “on” periods, and a phone option for bad off days
• More time to speak, and no finishing sentences
• Asking how someone feels instead of reading their face
• Treating apathy as a symptom, not a lack of commitment

Dementia, especially early on

What it can mean in therapy

In the early stages, dementia is often invisible to others. Wendy Mitchell, writing about her own diagnosis, describes a GP putting her symptoms down to slowing down, little follow-up afterwards, friends pulling away, and building her own workarounds as her memory changed (review of Somebody I Used to Know). Therapy can help with shock, grief, fear and planning, and with living well now.

What might help

• The same time, place and person each week, with a reminder
• Short written notes to keep, and one idea at a time
• Talking to the person, not their companion
• Planning for the future while the person can lead it

Other hidden and fluctuating conditions on this site

ME/CFS, long COVID, lupus, multiple sclerosis, chronic pain and fibromyalgia come up throughout the site, especially in the therapy exercises. For long-term mental health conditions, see Psychosocial Disability.