The cost of being too unwell to work - and still having to pay for care

Following Simon Harris’s speech about long-term unemployment and social welfare, I want to highlight the circumstances of people who cannot work because of illness or disability.

His comments concerned unemployment, but the wider conversation about welfare must recognise that people have very different circumstances. Those of us who are too unwell to work need financial security, accessible healthcare and dignity.

There is no fun in depending on a benefit while watching essential bills consume your income. There is no comfort in knowing you need treatment but cannot afford the appointment, the scan, the travel or the recovery costs.

For people living with endometriosis, delayed care can affect far more than our health. It can interrupt education, end careers, close businesses and leave us dependent on financial support we never imagined needing.

Then, while too unwell to earn, we are expected to find the money to access care.

Some pay privately because they cannot wait any longer. Some struggle to maintain health insurance so they have another route to assessment or treatment. Yet paying an insurance premium does not guarantee access to the specialist team they need, or cover every expense.

These costs sit alongside food, electricity, heating, housing and transport. They do not replace them.

How is someone supposed to manage all of this on a benefit, with no savings?

What happens when you live alone and have no second income to share the bills?

What happens when you are raising children and their needs must come before your appointment?

What happens when you have already used your savings trying to get well, and another consultation brings another bill rather than a treatment plan?

Living solo, I know the pressure of carrying household costs while trying to fund access to healthcare. I built businesses and contributed to my community. Depending on Disability Allowance was never the future I planned.

I continue to campaign, write and create awareness because this matters deeply to me. Being able to contribute in the moments my health allows does not mean I can sustain paid employment or meet the cost of my care.

People should not have to publicly disclose their pain, their finances and their most difficult experiences to explain why they need support.

This is part of why our petition for a National Inquiry into Endometriosis Care in Ireland matters.

An inquiry must examine the financial consequences of delayed diagnosis, inadequate treatment and barriers to specialist care. It must hear from people whose ability to work, raise children, maintain a home and live independently has been affected.

We need timely access to properly resourced, multidisciplinary care. We need treatment pathways people can actually afford to use, including those who cannot pay upfront for care abroad.

We also need recognition that a person can become dependent on State support while waiting for the healthcare that might improve their ability to work.

Please sign and share the petition, even if you previously signed on Change.org. Invite others to listen, learn and understand the lives behind this campaign.

✍️ Sign the petition:
https://my.uplift.ie/petitions/justice-for-endometriosis-patients-launch-a-national-inquiry-in-ireland

🎧 Listen to Cneasú the Podcast for conversations about lived experience, health, trauma and the support our communities need.

🎟️ Attend our events and learn more about this work:
https://www.eventbrite.com/o/76437028823?aff=ebdsshios

📖 Read more on my Substack:
https://doireannbarrett.substack.com

A benefit should provide enough security to live with dignity. Access to healthcare should never depend on having savings, a second household income or the ability to crowdfund.