Living with an invisible disability

Brain Foundation: Can you tell us a bit about your story and how you were diagnosed with epilepsy & Chiari malformation?

Andrea Nunn: I wasn’t born with epilepsy but developed it after a long battle with viral meningitis. This worsened an existing brain injury which was caused by medical trauma when I was three years old. Then as an adult, I was diagnosed with a possible pituitary adenoma (a benign brain tumour) and it was decided I should have an MRI scan every year to monitor it. In one of these MRIs, the doctors found that I have a Chiari Malformation. More cases of Chiari have been found in recent years due to advances in diagnostic imaging.

BF: How have these conditions affected your life?

AN: The epilepsy impacted my memory, and caused anxiety and sometimes depression. I didn’t know how this would affect me as a young adult. Because I developed meningitis in my final year of high school, I was offered an option to do my final year over two years. But due to boredom with the slower pace, I finished high school with my peer group.

Epilepsy affected me more when I entered the employment market, especially because I was still recovering from meningitis. It also affected the types of jobs and study I could do. In the early 90s I found a traineeship with Toowoomba regional council but quickly discovered I hated office work. Instead I did my certificate 2 in community pharmacy and found I was perfect for it, so I started working at Terry White in Toowoomba.

Each time I left a job after my traineeship it was indirectly or directly due to epilepsy. The bulk of my pharmacy career I was at Toowoomba Medical Chemmart and I was working late nights and weekends. This affected my sleep and social life, so one day I rage quit my job – this didn’t exactly go down well with my family, but we took the opportunity to take me off my medications because they were affecting my liver.

I then picked up casual work in another pharmacy. After one month of working there and a year seizure-free, I was found having a grand mal seizure and was rushed to my local base hospital. 

I can’t clearly remember the experience in hospital because I was in and out of awareness. But from what I pieced together with my family, I had a seizure so violent that I fell out of the bed and rolled underneath it. I injured my arm to the point that I had to have surgery. I’m mentioning this because many people don’t realise that seizures can cause physical injuries as well.

These conditions have affected every aspect of my life including relationships and the way I relate to people. People’s reactions vary when they find out that I have these conditions, and when I tell them how I need to manage the impact of my conditions. For example I can’t do high impact activities like going to rollercoasters or theme parks. I eventually stopped going to certain events because I was invited and people expected me to just look after everyone else’s bags or I was used as a free babysitter, which annoyed me.

BF: Those challenges are pretty significant – what has helped you manage these impacts?

AN: What I’ve found helpful has varied due to where I was living and what type of job I was doing at the time. When I was working in pharmacy I had accommodations to take regular breaks, and some pharmacies would use me to teach people about medication compliance and how it can improve your life.

Medication and lifestyle changes have been one of the main things that have helped me. Some basic changes have been important, such as getting enough sleep and not skipping meals. In Covid lockdowns I wasn’t eating regularly and I lost a lot of weight, which led to my medications not being absorbed properly.

I have also found that having access to the NDIS is a double-edged sword. Some providers see epilepsy as a simple health condition and will provide a minimum level of care because I present as very high functioning. With some support workers I have been in the difficult position of having to educate them on what a chronic illness is. But basic things like getting enough sleep, pacing myself, using dosage medication aids, and having the medication administered by support workers have all been helpful.

BF: What motivated you to create a blog about your experience of living with a disability? 

AN: I created Annie in Wonderland because of the distinct lack of awareness about the diverse impacts of living with a disability, and because the NDIS makes a minimal impact for some people living with a disability. 

Many people have to get advocacy networks to step in if you can’t afford to see a private doctor or other allied health professionals. But we see that people with higher socioeconomic status receive better packages because they can access better advocacy services. Also, in the NDIS I saw a systemic lack of training and a fundamental misunderstanding of disability (especially regarding chronic health conditions).

I saw a need for a perspective from the lived experience of a person living with a disability. Many blogs on disability are actually created by NDIS providers who were trying to sell their services. There was an implicit bias because these blogs would show how they supported people, but wouldn’t show the honest, raw, lived experience that people face. 

These blogs also don’t explain how to navigate the difficult terrain that is the NDIS, because it is hard to access and is challenging for some people to understand. I want to educate people about the reality of living with a disability and the stigma that still exists for people with disabilities or chronic health conditions, because this stigma can be difficult to deal with.

BF: What changes would you like to see in society or the NDIS? How can we improve support for people with disabilities?

AN: In the NDIS, I want to see support providers become genuinely people-focused. I find that many providers promote that they are person-focused, but in reality this isn’t always the case. So I want to see them be genuine and consistent in the support they provide.

I would also like to see a higher level of training for support workers, because from my perspective there is a systemic undertraining of people who work in the NDIS. This leads to very poor health outcomes – which means that more support is required in the long run. Disability impacts every aspect of your life and your family’s life, so appropriate training is very important.

In general there should be more accountability for the way health professionals treat people with intellectual disabilities and hidden disabilities, to reduce the stigma that people with disabilities face. This includes less judgement and ‘testing’ to see if a person has a disability. One example of ‘testing’ is having activities that might trigger seizures to see if the person has epilepsy. Plain and simple, this is abuse.

In society, I would like to see more disability awareness taught in schools and embedded into school programs. This can help create wider societal change. Children who mistreat or abuse people with a disability because they don’t know any better grow up to be adults who do the same – so it’s important to teach disability awareness to kids.

I would also like to see disabled content creators highlighted much more. There have unfortunately been some people who have faked disabilities for views, so there should be some sort of system where these people are held to account respectfully and not through cancel culture. This kind of system would make it safer for disabled content creators to post without fearing that they will be accused of faking their disability.

BF: What advice would you give to someone who is trying to be a better ally to people living with a disability?

AN: Believe them when they speak out about mistreatment and abuse by NDIS providers and believe them when they say they have a disability – even if they don’t fit your perception of having a disability. 

I have found many people who are trying to be a great ally don’t understand that disability affects people in various ways. It’s important not to speak over the person because they often will know what they need. Listen to them and instead of talking over them, be their amplifier.