The presentation explains my lived experience of a non-visible dynamic disability, coping strategies and the changes that have occurred as I have aged. As age-related conditions begin to surface, the overlap between disability symptoms and conditions relating to age is creating a blurred picture of my health.
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Disability and Ageing
Awareness and Diagnosis
I became aware of a problem with my immune system in my twenties while on holiday. I contracted a virus and suddenly began experiencing symptoms that drained my energy and ability to fully process and retain information. The symptoms didn't go away and I was diagnosed with an untreatable immune system dysfunction.
After several years of stable symptoms, another virus increased the severity of my condition and my employer terminated my employment. Unable to maintain an income, I applied for the Disability Support Pension.
Disability
My disability affects my:
- Immune system
- Central nervous system
- Psychological function
Coming to terms with my reduced functional capacity, I was faced with the idea that I had a disability and would have to adjust my expectations of earning an income while coping with day to day living. I learnt, the hard way, that if others couldn't see my disability, they wouldn't necessarily know, or even believe, that I had one.
Non-Visible Dynamic Disability
Severity can vary day to day, hour to hour.
Immune system fights non-existent infections, leading to severe fatigue.
Pain, neuralgia, tremors.
Short term memory loss and word recall difficulties.
Erratic and non-refreshing sleep.
Most of the time, no one can see what I am experiencing.
Coping Strategies
Improvised equipment/adjustments:
- Semi reclined chair for office work,
- Stool for use in kitchen,
- Walking stick for standing,
- Various cushions and pillows.
Pacing and planning activities.
Building recovery time into activities.
Partner is unpaid carer and performs most household chores and shopping.
Ageing
As age related conditions surface, an overlap of symptoms become. apparent. It increases the necessity to have any ongoing symptoms investigated.
I was referred to a neurologist who performed a complete physical examination and extensive blood tests, including genetic testing. These investigations brought to light an issue with my white blood cells and led to a further referral to a haematologist.
My GP is continuing to monitor other aspects of my health, particularly as I have had two falls.
Key Takeaways
When living with a non-visible dynamic disability, it is important to undergo testing for the symptoms. While they may have initially been considered untreatable, progress in medicine and similar age related symtoms, could lead to appropriate medication to ease or reduce the severity of symptoms.
Ageing affects everyone, regardless of whether or not they have a disability. However, those with disabilities may experience an increase in severity of impact.