Shingles, Chronic Pain, and the NDIS: Why Preventable Illness Is Becoming Unavoidable Disability | Robert Braxton

One in three people will get shingles. Many develop lifelong nerve pain, increased stroke risk, and functional limitations that can qualify for NDIS support. As someone building NDIS housing for people with complex needs, this story hits close to home.

WIRED published a piece this month that I've been thinking about ever since I read it. The headline was "You Should Be More Freaked Out by Shingles." The article is about a viral infection that one in three Australians will get in their lifetime — one that most people dismiss as a temporary rash, and that can quietly become a years-long disability. I want to talk about why this matters specifically for people who work in, care for, or depend on the NDIS. What shingles actually does** Shingles (herpes zoster) is a reactivation of the chickenpox virus, which can lie dormant in the nervous system for decades. One in three people will get it. The risk rises sharply after 50, and stress — particularly acute, sustained financial or caregiving stress — is a known trigger. The acute phase is severe. One patient in the WIRED article described it as "hundreds of invisible, tiny hot needles pricking my scalp and face" — worse, she said, than the time she broke her back, because there was no respite at all. But the acute phase isn't what concerns me most from an NDIS perspective. It's what comes after. Post-herpetic neuralgia (PHN) is chronic nerve pain that persists long after the visible rash heals. A meta-analysis of 2,519 patients found that people with acute shingles had quality-of-life scores 15 percent below the norm for physical health and 13 percent below for mental health. PHN can last years. Some patients describe it as unendurable. The Shingles Support Society in the UK has documented cases where patients ended their lives because of the ongoing pain. Additionally, people who experience shingles face a significantly increased risk of stroke in the 12 months that follow. Shingles affecting the face or eyes can cause vision damage and, in rare cases, encephalitis — serious brain inflammation. These are not minor complications. These are functional impairments. They are disabling conditions. The NDIS intersection** At BraxtonHoldings, my co-founding work focuses on Specialist Disability Accommodation for NDIS participants with complex needs — people who require high levels of physical support, who cannot live safely in standard housing, and who need environments designed specifically around their functional limitations. The pathways into that level of need are often not dramatic single events. They are frequently the accumulation of health events that weren't prevented, managed, or caught early enough. A stroke at 62. Chronic pain that becomes so severe it limits mobility. Nerve damage that affects daily function. These are the kinds of conditions that, over time, create the complex support needs that SDA housing is designed for. Shingles, unchecked, can be one of those pathways. The Shingles Support Society director puts it plainly: "The older you are, the more grueling it is. PHN can leave patients in unendurable misery in the final years of their lives." This is particularly severe for people who already have cognitive impairment or dementia — NDIS participants who may not be able to communicate or contextualise their pain — and for whom chronic, untreated pain becomes a profound welfare issue. The vaccination gap is the policy failure** Here's the part that should concern every support coordinator, NDIS planner, and aged care professional reading this: vaccination rates are dangerously low. In the US, around 34 percent of eligible adults over 50 had received at least one dose of the shingles vaccine as of 2022. UK coverage ranges from 33 to 45 percent. Australian data shows similar patterns — the Shingrix vaccine is available and highly effective, but uptake remains low. The reason? Most people think shingles is mild. They've never seen what severe PHN looks like. Public health messaging has consistently underemphasised the chronic pain outcomes and focused on the rash — which heals — rather than the nerve damage — which often doesn't. This is a communication failure with direct consequences for NDIS funding, carer burden, and quality of life. What support coordinators and carers should know** If you work with NDIS participants, particularly those over 50 or with immunocompromising conditions, here is what the evidence says: Shingles vaccine eligibility in Australia**: Shingrix is recommended for adults 50 and over and is available through the National Immunisation Program for people aged 65 and over, Aboriginal and Torres Strait Islander people from age 50, and people with specific medical conditions from age 18. Check current eligibility with the participant's GP. Early treatment window is critical**: Antiviral medication (acyclovir or similar) must be started within 72 hours of symptom onset to meaningfully reduce severity and PHN risk. Symptoms — tingling, burning, or unusual sensation on one side of the torso, face, or scalp — should trigger urgent GP contact, not a wait-and-see approach. Stress is a documented trigger**: NDIS participants and their carers often carry significant psychological stress. Carer stress in particular is a known immunosuppressive factor. Supporting carer wellbeing isn't just compassionate — it's a direct risk-reduction strategy for shingles. PHN is a recognised functional impairment**: If an NDIS participant develops PHN, this should be reflected in their support plan and plan review. Chronic pain that limits daily activity, mobility, sleep, and psychological wellbeing is directly relevant to their functional capacity assessment. Document everything**: If a participant develops shingles or PHN, the functional impact should be comprehensively documented — not just the diagnosis, but the effect on daily living activities, sleep, mood, mobility, and independence. This documentation supports appropriate plan funding. The broader point** The WIRED article concludes with a plea from researchers and clinicians: "Everyone thinks, 'It's a month of pain, I'll manage,' but if it turns into a lifetime of chronic pain, that's something different." That sentence describes, almost exactly, the cognitive error that leads to avoidable disability. We systematically underestimate what happens when temporary conditions don't resolve, when illness compounds, when a single preventable event tips someone from independent living into needing full-time support. As someone building housing for people at the complex end of the NDIS — people who have often been let down by exactly these systemic failures to prevent, catch, and treat conditions early — I read articles like this one differently. The vaccine costs less than a single support hour. That asymmetry should be enough. Robert Braxton is co-founder of BraxtonHoldings, an NDIS Specialist Disability Accommodation provider in Victoria, and CEO of Simple Complex Solutions. For enquiries about SDA housing or NDIS technology solutions, visit robertbraxton.com or call +61 417 226 549.*