Personal Journey with Non-Visible Disability

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September 1984 – travelling between Sacramento and Reno

• Sudden onset flu symptoms without fever
• Continued for several months
• Main symptom was cognitive dysfunction
• Likely cause was retrovirus
• Symptoms diminished over several years

I remained undiagnosed until the winter of 1988. After successive colds and bronchitis, my GP told me that I had an untreatable immune system dysfunction.

Three months later I still I had symptoms of Glandular Fever. My immune system dysfunction was preventing me from recovering. I returned to work, but could no longer exercise.

My health deteriorated further and my employer terminated my employment. I moved to Sydney where I was misdiagnosed by a GP as having a psychiatric disorder. A psychiatrist overturned this diagnosis. The GP then referred me to a haematologist who ran extensive blood tests, and diagnosed me with an untreatable immune system dysfunction, which was the same diagnosis a GP had made seven years earlier. 

After securing access to the Disability Support Pension, I started to accept the idea that I was disabled. I had gone from living a full life to significantly reduced functionality, and was mostly housebound. When I ventured out, I took steps to avoid another viral infection. I moved to Melbourne and lived by the bay.

As I accepted my disability, my small group of friends became smaller. Some had been openly dismissive and others formed opinions that I had given up and wasn't trying to get better. They had no concept of non-visible disability. While the situation was initially hurtful, I eventually accepted that I was better off without their toxicity in my life. I discovered an online support group, which helped me immensely.

Increasing pain led to a diagnosis of a problem with my central nervous system and with my back. I was able to take advantage of publicly funded hydrotherapy, which helped musculoskeletal pain, but not other forms of neuralgic pain that didn't respond to medication.

This had an impact on my mental health and my treating GP suggested that psychotherapy could help me cope with not just my disability, but the grief I was feeling about losing aspects of my life that were important to me, while in my mid thirties, particularly loss of income and career.

I left Australia in July 2000 and flew to London. Out of the blue I was approached by a recruitment agency with an opportunity with an oil company in The Netherlands. When my contract ended, I secured a permanent job with a chemicals company. The job started well. I could manage my health by resting during quiet times of the month. During busy times I concentrated on working long hours and resting. My manager recognised my efforts and offered me a role on a project to role out a new computer system across Europe.

I spent several months resting and stabilising my symptoms before finding a short term temporary position with a city council. My assignment was cut short by my manager because I took too many (unpaid) sick days. 

My next role as a health analyst with the NHS was more successful. After my assignment ended, I moved to rural area and secured a similar part-time position. As my experience increased, I reduced my days to three per week and was home based, with occasional visits to the office and GP practices.

I returned to Australia in 2008, along with my partner and two cats. The working situation I had enjoyed in England did not continue in Australia and my health began to deteriorate again.

I applied to go back on the Disability Support Pension. My claim was denied and I did not have the energy to go through the appeals process.

The pattern of working in contracts, with breaks to recover between them, continued for many years. Sometimes I shared information about my disability, and sometimes I kept quiet and suffered in silence. Through this effort my health stabilised and, for the most part, I achieved the best possible work/life balance. I continued to encounter managers who refused to accept my disability and others who were empathetic to my situation.

The DSP provides a safety net, but is not the end of the story. Life goes on, and I continue to look at ways of working within my abilities. This is difficult, due to the nature of my disability. My energy fluctuates between being able to undertake minor tasks to not being able to do anything more than getting out of bed. Even sitting, partially reclined, at my computer isn't possible on my bad days.

I have a great team of specialists, who deliver services via Telehealth. My GP coordinates my general health requirements, including prescriptions, blood tests and referrals. I am able to walk, unaided, but carry a walking stick for occasions where I have to stand for extended periods.

I developed a home based business and became a certified NDIS support worker. I use my lived experience to help NDIS participants to find and keep a job. My business services deliver solutions to employers to fulfil their obligations to support job applicants, new hires and employees, with disabilities. I also develop initiatives to provide services to Australians facing disadvantage. I work within my own capabilities to ensure I am able to deliver services as promised and avoid further deterioration of my health.

My life is quiet, with much of it spent at home. When possible, I do some light gardening and cooking. I developed in interest in designing and crocheting blankets. However, I have trouble following the patterns I have written and have difficulty using a crochet hook. I occasionally go on trips for business. These trips require a lot of planning and include rest and recovery from travel and attendance at events. I sometimes visit the coast with my partner and enjoy photographing the artwork on silos and water towers that we pass on the way.