My Disabilities
I like to describe myself as having a brokedown body and a moshpit mind. The reason for this is my seemingly ever-growing collection of diagnoses of disabling chronic illnesses and neurological differences. This page is dedicated to providing a little bit of information and awareness of my disabilities and diagnoses.
How I'm Disabled
Neurodiversity
My brain works differently to a significant majority of people which means functioning within society as it’s currently set up is somewhat of a challenge for me. I struggle to manage my emotions, behaviour, thoughts, and attention in a way that is appropriate for the world around me.
Chronic fatigue
My body is in a near-constant state of fatigue that is unrelieved by rest. I am always running on less energy than the average healthy person. The level of fatigue and energy drain does vary depending on the day, but it’s very unpredictable so I’m never sure exactly what I’m going to be able to achieve each day. This has thankfully improved since I started treating my ADHD.
Dysautonomia
My automatic nervous system is a whole ass mess and likes to misfire on the regular. It affects a variety of different “automatic” functions of the body including heart rate, blood pressure, digestion, temperature control, breathing, and the senses (including movement). I have trouble with all of the above.
Chronic pain
I suffer from both general, widespread pain and localised pain caused by my various diagnoses, which like the fatigue, is near-constant. The pain can range from annoyingly niggly but ignorable to “holy fuck, why has Satan decided to set up camp in my body?” all in one day.
Mental illness
As you would expect, being neurodivergent and chronically ill has lead to some mental health issues. I’ve experienced (and continue to experience) depression and anxiety at varying levels during the course of my life, which can also contribute to my ability to be a productive member of society.
Why I'm Disabled
(the causes of my disabilities, in order of diagnosis)
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
ME/CFS is a complex neuroimmune disorder which affects multiple systems with many symptoms. As the name suggests, fatigue is the major hallmark symptom, but it can affect anything that requires energy to function correctly (which is pretty much everything on a body, tbh).
Diagnosed: October 2006.
Probable cause: Epstein-Barr virus.
Treatment: Pacing, rest, letting my body do what it wants.
Fibromyalgia
Fibromyalgia is a chronic pain disorder in which the entire musculoskeletal system is affected without an obvious physical cause. It’s theorised this is due to the brain & spinal cord incorrectly processing pain signals. It also causes sensitivity to otherwise non-painful stimuli.
Diagnosed: October 2009.
Probable cause: Epstein-Barr virus.
Treatment: painkillers, modifying body position to relieve pain, rest.
Recurrent Major Depressive Disorder with Seasonal Pattern (Spring-Onset)
Recurrent MDD with seasonal pattern was previously known as seasonal affective disorder (SAD). It’s a mental condition in which there is a mood change triggered by the change of seasons. It most commonly affects people in the autumn/winter, but I experience it in spring/summer.
Diagnosed: December 2010 (summer in New Zealand).
Probable cause: general health and climate change, tbh.
Treatment: currently nothing, previously anti-depressants.
Idiopathic Generalised Epilepsy
Epilepsy is a seizure disorder which is caused by misfiring neurons in the brain. My particular type of epilepsy doesn’t have an identifiable cause and my seizures involve the entire brain rather than particular parts of the brain. I experience both tonic-clonic (convulsive) seizures and absence (brief moments of unconsciousness) seizures.
Diagnosed: September 2013.
Probable cause: stress.
Treatment: currently nothing, previously anti-convulsants.
Interstitial Cystitis
Interstitial cystitis is a disorder of the urinary system which causes bladder pain & pressure and pain upon urination. It can also cause problems with urgency and frequency. The pain is often relieved by urinating, but sometimes, if something is particularly irritating to the bladder has been consumed, it stays painful even when the bladder is empty.
Diagnosed: June 2014.
Probable cause: endometriosis, fibromyalgia.
Treatment: urethral dilation, painkillers, avoiding over-hydration.
Sebopsoriasis
Psoriasis is an autoimmune disorder where there is an overproduction of skin cells that cause inflamed and scaly patches of skin. My particular kind of psoriasis is mostly restricted to my scalp and oily parts of my face, following the same pattern as dandruff (seborrheic dermatitis). I weirdly do not have oily skin though.
Diagnosed: December 2015.
Probable cause: broken immune system.
Treatment: topical medicated products, reducing stress, moisturising.
Endometriosis
Endometriosis is a condition where cells similar to endometrial tissue, which normally grows inside of the uterus and is what is shed during menstruation, grow outside of the uterus. It can grow almost anywhere in the general vicinity of the uterus, but it cannot be shed like regular endometrial tissue causing a build-up that is painful, particularly during your period.
Diagnosed: March 2018.
Probable cause: unknown.
Treatment: progestin-only birth control.
Psoriatic Arthritis
The same autoimmune disorder that causes my sebopsoriasis also affects a number of my joints. Arthritis is the swelling of joints, causing pain and stiffness. My most affected joints are mostly on my right side: sacroiliac (hip to pelvis) joint, shoulder, neck and toes, but I also have a bad left knee.
Diagnosed: August 2018.
Probable cause: sebopsoriasis, broken immune system.
Treatment: painkillers, rest.
Chronic Sinusitis
Most people have at least one mild sinus infection in their lifetime, so imagine that, but... all the time. My sinuses are constantly inflamed and do not respond to steroidal treatment. I wake up with full sinuses most mornings and often have pain in my face.
Diagnosed: March 2021.
Probable cause: broken immune system.
Treatment: antihistamines, saline rinses.
ADHD-C
ADHD is a neurodevelopmental issue which is best described as an executive function disorder which can cause inattention, hyperactivity and/or impulsivity to a level that is disruptive to everyday life. I have a combined (hence the C) diagnosis, meaning that I struggle with all three of these, but you can also be primarily inattentive or primarily hyperactive/impulsive.
Diagnosed: November 2022.
Probable cause: neurodevelopment.
Treatment: stimulant medication, therapy.
Unofficial, Revised & Removed Diagnoses
Sensorineural Hearing Loss
I am currently under investigation for hearing loss following my COVID infection in March (2023). What I originally thought was just fullness from otitis media with effusion (aka "glue ear") turned out to be a bit more than that. I am now waiting for the official diagnosis and to find out the degree of hearing loss.
Long COVID
Long COVID is characterised by symptoms that last longer than 5 weeks following an acute COVID infection. With the absence of a positive test due to the infection happening in early 2020 combined with my existing post-viral diagnosis (ME/CFS), my doctor was not able to officially diagnose me with Long COVID despite believing that I do have it. Since the beginning of the pandemic, I have suffered from increased symptoms of ME/CFS and fibro with the added symptoms of breathlessness and heart issues. The heart issues got worse following a confirmed COVID infection in 2023, but Long COVID has not been confirmed.
Illness Anxiety Disorder
IAD is also known as hypochondriasis, a mental illness where you are excessively worried about your health and risk of serious illness. My doctor has been hesitant to actually diagnose me with this because I am very self-aware of the problem and will try to avoid seeing a doctor until either the anxiety is too much or I am actually very clearly unwell. It has also improved with the treatment of my ADHD.
Major Depressive Disorder
MDD is a chronic mental health condition that causes low mood and loss of interest. Although I wasn’t officially diagnosed until 1999, I think I was experiencing symptoms from 1991. This diagnosis was removed in 2004 following treatment. It has since been replaced with my MDD with seasonal pattern diagnosis, as I only experience chronically low mood during the spring and summer months now.
I also suspect Postural Orthostatic Tachycardia Syndrome (POTS), but I don't think I will be able to get a diagnosis for it any time soon.
FAQ
What is a spoonie?
Very basically, a spoonie is a chronically ill person whose illness(es) cause limited energy. It comes from Christine Miserandino’s Spoon Theory, which is a metaphor for the availability and allocation of energy (spoons) to complete every day tasks. Some chronically ill people do not like this term because it somewhat minimises their experience, but I personally like its simplicity and ability to convey my status as a chronically ill person to fellow “spoonies” and others in the know.
What does ‘dynamically disabled’ mean?
Generally, when someone thinks of a disabled person, they likely see someone faced with the same level of disability every day with needs to match. A dynamic disability is one where the level of disability is variable and can change from day to day (or even hour to hour!). This means someone with a dynamic disability can appear to be totally unimpeded by their disability one day and completely incapacitated by it the next. This term was coined by Brianne Benness, who explains it beautifully in this article.
How do you feel about self-diagnosis?
I have somewhat conflicting views on this. I think it depends on exactly what is being self-diagnosed, what the benefits of self-diagnosing are, and your access to diagnosis. Neurodivergence and some mental illnesses can be okay to self-diagnose if you’re using the diagnosis as a focus point to help yourself either accept yourself or better yourself, but self-diagnosing a physical illness can be dangerous, especially if you intend to also treat it yourself.
Do you use person-first or identity-first language?
While I absolutely respect person-first language, and will use it if you ask, I prefer identity-first. I am disabled and have been for almost half of my life. I am neurodivergent and have been for my entire life. These are things that are part of my identity and are unlikely to change.
Why do you make your disabilities part of your identity?
Because they just are. They make me who I am, affect me every day, and have fundamentally changed how I interact with the world. I cannot separate myself from them, and don't see why I should for the benefit of others. I talk about my disabilities to spread awareness and let others know they're not alone in their own journey with chronic illness and neurodivergence.
Have you tried *insert treatment here*?
If it’s easily accessible and affordable, most likely. I have been ill for 15+ years, so unless it’s something groundbreakingly new, I have probably tried it. If I am looking for help, I will specifically ask for it. Please do not offer suggestions if I haven’t asked. Also, always keep in mind that treatment is not universal for chronic illnesses so things that may have worked for you or other people you know may not necessarily work for others.
How do you deal with being disabled?
I like to think I am a realist when it comes to my disabilities. I mostly just try to accept that I am disabled and work within the frame I’ve got rather than try to positive thinking bullshit my way into living ~a better life~. I see my disabilities as something I just have to deal with. I enjoy myself when I can, and allow myself to feel whatever I need to when things aren’t going so well. Acceptance is my ultimate goal.
Do you think you’ll ever get better?
I have been somewhat hopeful that my physical being will improve now that I am being treated for ADHD, but no, I don’t think I’ll ever be fully recovered to the point I was before I fell ill. But like I said earlier, I am working on acceptance now, so it shouldn’t matter too much if I don’t.