My Diagnoses

Jase is sitting in their wheelchair holding a sign that says Millions Missing: Stop CBT and GET for ME

Myalgic Encephalomyelitis (ME)

This is also known as Chronic Fatigue Syndrome, although I hate that name! It makes it sound like you’re just a bit tired, when the reality of this illness is very different. There are four ‘categories’ of this illness: Mild, Moderate, Severe, and Very Severe. I am classified as Severe, which means I am housebound (unable to go out alone) and mostly bedbound (I spend all my time lying down in bed or on the sofa!) although I am able to get myself to the bathroom most of the time, with use of mobility aids.

The symptoms of ME vary wildly from day to day. It is a fluctuating condition, and quite often symptoms can appear randomly and with no apparent pattern, which is why this is a very difficult condition to diagnose. It took me four years to get my diagnosis, during which I was incredibly ill with little to no medical support. Symptoms can include the following, but not everyone gets all of them, and they can vary in severity from person to person. I also may have missed some off this list!


  • Chronic fatigue
  • Post-Exertional Malaise (feeling awful after activity, which can hit either a few hours later or up to two days later and can last for days, weeks, or even months)
  • Dizziness
  • Sore throat
  • Enlarged glands in throat
  • Orthostatic intolerance (difficulty in remaining standing)
  • Sleep disturbances like insomnia or oversleeping
  • Cognitive difficulties
  • Nausea
  • Pins and needles/numbness
  • Sensitivity to light and sound
  • Gastrointestinal issues

HSD (Generalised Hypermobility Spectrum Disorder)

This is a connective tissue disorder that causes a wide variety of symptoms effecting almost every system in the body. Connective tissue is the stuff that holds joints together, as well as holding organs in place, so it causes multi-systemic problems which often make it challenging to diagnose.

Symptoms include:

  • Chronic joint paint
  • Joint subluxations (partial dislocations)
  • Hypermobile joints (joints that bend further than they should)
  • Dysautonomia/autonomic nervous system dysfunction e.g. dizziness, high heart rate, low blood pressure, issues with temperature regulation
  • Gastric issues e.g. low appetite, nausea, feeling of fullness, difficulty swallowing
  • Bladder issues e.g. frequent infections
  • Fatigue


This comes hand-in-hand with my other conditions, but it is actually the first thing I was officially diagnosed with. It’s often overlooked despite being extremely painful and one of my most disabling conditions. Costochondritis affects the costochondral joints in the ribcage, leaving them inflamed and extremely painful. It is described as a temporary condition that lasts only six months to a year, but I’ve been suffering since I was a teenager and it’s definitely chronic for me. Anti-inflammatory medication can help, as does heat treatment like hot water bottles or microwavable bags.

Symptoms of costochondritis are:

  • Severe pain at the top of the ribcage that can spread to one or more rib
  • Chest is sensitive to touch
  • Pain that comes and goes and can feel like a deep ache or sharp and stabbing
  • Difficulty breathing

Irritable Bowel Syndrome (IBS)

This is a very common condition that affects the digestive system. Cramps and painful bloating are common symptoms, often made worse by certain foods that may be intolerances. For me, I have had a lot of success with following a low-fodmap diet with the help of a dietitian, though not everyone finds this helpful.


  • Painful cramping in the stomach
  • Bloating
  • Diarrhoea
  • Constipation
  • Food intolerances
  • Nausea
  • Vomiting

Benign Paroxysmal Positional Vertigo (BPPV)

This condition, in my case, is caused by three inner ear infections which have permanently changed the crystals in my inner ear. Diagnosis is made by performing a manoeuvre called the Dix-Hallpike test, or Nylen-Barany test, in which the patient lies down and moves their head in a specific way to bring on symptoms of dizziness and nausea. The doctor also looks for a distinctive pattern of eye movement. When I did this test, I went green!


  • Dizziness at changes of position, turning the head etc. that lasts a few seconds/minutes before passing
  • Nausea
  • Vertigo with a distinct spinning sensation
  • Vomiting if the dizziness is severe
  • Feeling faint/fainting
  • Difficulty reading during an episode