The first week of May has blown in every kind of weather. Hailstones, rain and wind pelted a beautiful rose bush that grows tall in my tiny back yard. Bursting with buds, it finally came loose from its tether today and fell to the ground. It was the perfect metaphor for the journey I am on.
Two days ago, I drove in the pouring rain to RTÉ to sit in a radio studio with Sarah McInerney for an interview on Drivetime. This moment was the culmination of weeks of work, of me trying desperately to get politicians and Ministers to sit up and pay attention to a very serious situation.
I have endometriosis. It’s a horrible, progressive disease that causes debilitating pain, infertility, heavy periods and a rake of other nasty symptoms. Every morning, I sit on the edge of my bed and break pills from their blister packs. One after the other they pop. Tapentadol prolonged-release, my first opioid of the day. Pregabalin, for nerve pain. I’ll take more of those later. Paracetamol, to get a head start on the pain. Difene, a suppository, because when you really have to, you do what you have to. I set alarms on my phone, countdowns to tiny moments that will bring me relief throughout the day.
After I fill my belly with pain medication, I sit and wait, willing my body to be a functioning parent to my eight-year-old daughter. The fatigue from the disease is getting stronger by the week
After I fill my belly with pain medication, I sit and wait, willing my body to be a functioning parent to my eight-year-old daughter. I make coffee. The walk to the kitchen tells me what the day’s pain might look like. I push it to the back of my mind. The fatigue from the disease is getting stronger by the week. I make an espresso. I usually need two.
I leave the TV on Netflix Kids for way too long to buy myself time to get moving. Showering, dressing, brushing my hair – activities of daily living, they call them – feel like Olympic-level hurdles. But they have to be done. I have to make the day begin. I have to fake wellness and carry on.
This is my life. Millions of women around the world live it. One in 10 women has endometriosis, a disease as common as asthma or diabetes and as poorly understood as the modh coinniollach.
There is no access to healthcare for advanced or complex endometriosis in Ireland. None. Minister for Health Stephen Donnelly admitted this himself in a press release last month. The only option for women suffering with this disease is to travel abroad for care. It's a grim proposition.
I am scheduled for surgery to excise the endometriosis raging in my body, in Atlanta, in a few weeks. The logistics of getting to this point have been exhausting: paperwork, tests, second opinions, third opinions, examinations, transatlantic Zoom meetings, phone calls, more paperwork. But I finally had an end point. There was hope on the horizon.
Two weeks in a hotel room, straight from the airport. An utterly unacceptable ask. Every doctor I have spoken to has said you shouldn't put a postsurgical patient in a hotel
And then the United States was placed on the list of designated states for mandatory hotel quarantine. Two weeks in a hotel room, straight from the airport. An utterly unacceptable ask. Every doctor I have spoken to has said you shouldn't put a postsurgical patient in a hotel. My hope faded fast as I felt my end point slip away.
My surgeon in Atlanta wrote a letter for me to give to anybody in Official Ireland who could help. In it, he pleaded a case for compassionate exemption from hotel quarantine and to allow me to quarantine in my own home when I return from my surgery. I’ll be using a wheelchair, and have open wounds that require dressing. I will probably require help with washing and feeding myself, and with walking.
I started the process of taking a High Court case, but that would have been both expensive and incredibly stressful for somebody who is already chronically ill and in debilitating pain every day. I had to stop, because there’s only so much I can cope with.
I contacted the HSE, the Department of Health, the Department of Justice, the Department of Foreign Affairs, US consular services, TDs, and Donnelly's office. In some emails, I even begged private secretaries to bring my case to the attention of Ministers. I requested review of the current legislation to include an exemption from hotel quarantine for the thousands of people who need to travel abroad for healthcare. Mostly, I was ignored, or dismissed.
So I went on national radio and put my private life in public. Exposing personal pain like this comes at a cost. Being that vulnerable is hard and scary. The response has been deafening silence. The Minister for Heath’s office did not respond to RTÉ for comment. And there’s a reason why you should care about this.
When a parliamentary question was put to Donnelly about the issue of hotel quarantine and people returning from medical treatment abroad, part of the response was: “Neither I as Minister for Health nor my department have a role in decisions relating to whether individual persons must enter mandatory quarantine or whether individual persons are exempted travellers. All such decisions are to be determined in accordance with the provisions of the Act.”
I'm so tired of fighting this disease. I'm so tired of women having no option but to leave Ireland to access healthcare. It's 2021 and we're still at it. We're still sending our girls and women overseas for medical treatment
This is an abdication of responsibility. It displays a staggering lack of compassion by a Minister for Health. Donnelly added that medical services are available at all times to ensure the health and wellbeing of every person in mandatory hotel quarantine. But I’ve heard of people, barred from leaving their rooms, having to wait five hours for a bottle of water to be delivered. It would be a terrifying prospect for me and my family to think that I might be alone, without the help I needed on hand.
Most of all, the Minister’s denial that he or his department has any role to play in deciding who has to go into mandatory hotel quarantine exposes a lack of accountability. Right now, this is about me and my supercommon gynaecological disease that can’t be treated effectively in Ireland. Tomorrow it might be you, or someone you love, who needs to travel for care.
I’m so tired of fighting this disease. I’m so tired of women having no option but to leave Ireland to access healthcare. It’s 2021 and we’re still at it. We’re still sending our girls and women overseas for medical treatment. And as the law currently stands, they’ll have to sit in a hotel alone for two weeks when they come home. It’s cruelty beyond measure.
If I can’t get an exemption from mandatory hotel quarantine, my disease in going to progress. I’m going to be in more pain. I’ll have to wait until the US is taken off the designated-states list. Then I’ll have to wait until another surgery date opens up. It’s going to be a horrible, painful process.
This is the part of the piece where I’m supposed to find meaning in a metaphor about a rose bush falling over. But I won’t do that. What I’ll do is tell you that I’m falling over. Some days I’m on the ground, laid out flat with pain, too tired to get up again.
There’s a fix for this. I just can’t go get it.