Living Out Loud: Disability, Neuropathy, and the Internet

 I’ve talked quite openly about my health and disabilities, and people in my personal life have seen some unwise and unthought-out content I’ve shared. I can see where the pushback comes from, and I acknowledge that a lot of healing has been done in my personal life. But why do I talk about these issues so often and so publicly on the internet? Honestly, I started this blog focusing on media and touched a little on disability, but I couldn't keep up as so much was changing in my life. I naturally started talking more about what I knew—disability and the NDIS—because there wasn’t much content from people with lived experience in Australia. While many providers use social media for promotion, I take pride in being independent.

For me, it's about myth-busting what disability looks like. I’ve even had to reevaluate my own thoughts and expectations of myself. I’ve realized that disability isn’t a dirty word. By speaking out about my experiences, I can build a community that doesn’t pity people with disabilities or want to "cure" them. Sure, many of us would love a cure, but we advocate for change and research where no cure exists. There are amazing medical and scientific advances, but it would be ignorant to assume that everyone with a chronic illness or mental health condition receives the support they need.

There's a term called "masking," which, in simple terms, means pretending to fit in—acting as if you’re not in pain when you have chronic pain, suppressing stimming, or even trying not to tic if you have a condition that causes tics. But this puts immense pressure on the body, and that’s why "de-masking" and having disability-safe spaces are crucial, not just for accessibility but for the health and wellbeing of both individuals and their caregivers.

I’m also still learning about my own conditions. One of the most challenging is neuropathy, which we can’t figure out the cause of because it's related to nervous system damage. I've experienced nervous system damage due to epilepsy, and I think people often underestimate the effects of this condition. Epilepsy isn’t just seizures; it can cause or be caused by brain damage. I’m fortunate to have an amazing medical team and support network.

I also have FND (Functional Neurological Disorder), which complicates things. It’s not well understood, but it's thought to be trauma-induced. It’s often described as a "software issue" in the brain that manifests in the "hardware," but I don't think that fully captures it. I won’t go into detail about my other conditions like Sjögren's Syndrome, ADHD, or brain damage here, as they deserve their own posts. However, I do want to highlight the misinformation surrounding ADHD. It’s frustrating to see this debilitating neurological condition reduced to a personality trait online, and that's not okay.

Neuropathy, though, is the condition that really affects me, and people often don’t expect it to be such a big issue. We don’t know what causes it, but it's essentially nerve damage. I feel my nerve impulses as heat, tingling, shocks, and pain. I describe it like standing on a green ant nest, being bitten, and trying to wipe it off—but you never can, because it’s under the skin and in your nerves. It affects my sleep, which then impacts my mood and thinking.

As I talk about my health, I’m not trying to alienate anyone. In fact, I’m trying to do the exact opposite: to educate and build a community of people who are working to rebuild their health—not in a “crunchy mum” way, but by working closely with doctors and medical professionals.

Talking about my conditions publicly also helps me accept them. There’s a grieving process when you realize something can’t be cured, and you have to adjust your expectations of yourself. Others may not always be kind, but I’ve made a semi-educated choice to be open about it. The internet can be unkind at times, but it can also be a very kind place—a strange paradox I’ve come to accept.

On a personal note, I’m working towards a cryptography qualification, but it’s tough. ADHD, brain damage, and learning gaps in math are making it harder than it needs to be, but I enjoy the challenge.