An illness generally becomes “chronic” when the symptoms and/or after-effects persist for longer than three (3) months and cannot be cured through treatment, only managed. Symptoms of chronic illness can get progressively worse, remain stable, or go through periods of remission and relapse. Chronic illness can also range from mild and manageable to debilitating and disabling, so although up to 40% of people have at least one chronic illness, it may not affect how they live their lives in any meaningful way.
The disability from chronic illness can vary depending on the illness, but it often causes overwhelming fatigue, widespread pain, poor sleep, cognitive impairment, issues with movement, damaged self-esteem, social isolation and alienation, and financial burden. In a society where the value of a human being is the amount of labour they can contribute in 8 hours a day while also still taking care of themselves, their homes, and their relationships, even just one of these things can lead to disability.
Getting diagnosed with chronic illness can be extremely challenging and is often a very lengthy process. Some illnesses can take years to be diagnosed and will often be misdiagnosed before the correct diagnosis is made. It is also estimated that 25% of those with chronic illness have more than one. Some illnesses can be independent of each other, but it’s more likely that one chronic illness causes or affects the other(s). Chronic illness is also common in people with congenital neurodevelopmental disorders (such as ADHD!).
For some people, their chronic illness can be very visible through the use of mobility aids and medical devices, but for others, you would never know that they are ill. In fact, chronic illness can be dynamically disabling. You may meet a chronically ill person on a “good day” and be none the wiser about their disability, but the next time you meet them, they may be using a wheelchair or can only chat for a short time. It’s very difficult to identify a disabled chronically ill person.
My Chronic Illnesses
I currently have ten diagnosed illnesses, as well as one unofficially diagnosed and one suspected. Below is a ~quick~ timeline of when I fell ill and when I received my diagnoses. If you’re interested in my full story in detail, please see the My Story series of blog entries.
My Chronic Illness Timeline
I fall ill with what I assume is “just a cold”. I continue to work through it thinking I’ll be better in a few days.
I see my doctor because I’m not recovering from the “cold”. She assumes it’s depression and I try anti-depressants.
I have two tonic-clonic (convulsive) seizures on consecutive mornings following an extended period of vestibular symptoms.
After the long wait for the necessary scans and a few more seizures, I am diagnosed with idiopathic generalised epilepsy.
My ongoing bladder and urinary tract problems since falling ill led to a diagnosis of interstitial cystitis.
My ongoing skin issues (on my scalp and face in particular) led to a diagnosis of (sebo)psoriasis.
I come off my birth control for the first time since falling ill. The return of my period causes intense pelvic pain.
The investigation into my menstrual pain leads me to an endometriosis diagnosis (but this may need revising).
My bad hip becomes more painful than usual, so I get it checked out and end up with a diagnosis of psoriatic arthritis.
I get a sinus infection in the height of summer, but like so many illnesses before it, it never went away.
After investigation and many failed attempts to treat my sinus “infection”, I am diagnosed with chronic sinusitis.
I get COVID and think I’ll be okay because I’m fully vaccinated and boosted, and I knew to rest this time. 🤡
I am unofficially diagnosed with long COVID after experiencing hearing loss, neuropathy, heart issues and increased ME/CFS symptoms.
After clearance for the heart issues and a trial run of nortriptyline which improved my pain, I was diagnosed with peripheral neuropathy.
The investigation into the cause of my hearing loss leads to a diagnosis of temporomandibular joint (TMJ) dysfunction.