The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice. Please note this post only uses first names and some names have been changed to protect privacy.
As hospitals and doctor’s offices around the world go into lockdown to contain the spread of the Covid-19, other health conditions are often being put on the back burner. And while fighting Covid-19 is rightly the top priority for healthcare professionals right now, a lack of access to other types of care is especially affecting the disabled community. When I began researching for this article, I put a call out on social media for stories. The response in just one day was overwhelming. People discharged with no warning, appointments and life-changing operations cancelled just days beforehand, all with no explanation.
Those with chronic illnesses are finding their long-standing appointments with specialists are suddenly cancelled. Kayleigh has been having chronic pain associated with endometriosis and was supposed to see a new pain specialist, but after waiting for five months, her appointment is no longer happening.
“It was a huge blow,” she said. “But mainly, I felt guilty for feeling disappointed that my pain wasn’t considered important. I felt ashamed for being frustrated. There are people worse off than me so I should be grateful. But it’s hard when you already have a condition that is largely shrugged off. I felt invisible.”
Kayleigh’s feelings are common for people with chronic illnesses. After being made to feel insignificant for so long, you start to doubt if your own pain is important enough. At a time when we’re being urged to only go to the emergency room if the situation is dire, many chronically ill and disabled people will suffer at home.
Claire was diagnosed with stage-4 cancer last year. After being given the all-clear for her diagnosis, all CT scan appointments to monitor things were cancelled.
“Being told my CT scan was being cancelled was awful. I cried and was devastated, as all of a sudden no one was making sure I was ok or looking after me. I felt that I’d been left to deal with my condition on my own. If I have a recurrence, I don’t know when anybody will find out.”
In addition to cancellations of follow-up appointments and testing, non-surgical treatments such as injections or replacement of equipment are also being deemed non-essential as doctor’s offices try to protect their staff and limit the spread of infection.
I have undiagnosed but suspected endometriosis, so I get a monthly injection of Zoladex, which puts the body in medical menopause, meaning I can function normally without being in constant excruciating pain. However, because of the lockdown in the UK I’ve not had this injection since mid-February and have seen what was supposed to be my March injection appointment cancelled six times. I have no idea when I’m going to next be able to get the injection I desperately need, and am currently experiencing painful ovulation as my body resets itself.
Many are also finding important, life changing surgery, which would have been deemed high priority before the pandemic, has been cancelled with no idea when or if they’ll be rescheduled.
Lucy’s husband has Familial Exudative Retinopathy, which causes blindness. He was due to have an appointment to discuss the possibility of restoring the sight in one eye when lockdown happened. “The possibility of the operation was both exciting and nerve wracking enough, but the delay is causing a lot of anxiety.”
The National Health Service in the UK is at breaking point and can barely provide the care that’s needed for all those suffering from coronavirus. In order to be able to afford protective equipment and the space that’s needed, the once free service is now relying on donations and fundraisers from the public. This means that those who have paid taxes all our adult lives are now having to fund the free service instead of the government.
To thank key workers for all their sacrifices, we have a weekly clap for carers on Thursday nights at 8pm. While the sentiment is beautiful, it hard to do when you’re feeling so let down by the NHS. As Claire puts it, “I felt like my health/life was being potentially sacrificed to make provision for coronavirus. I have found it difficult to accept the Thursday clapping as even though I know people are working hard in the NHS, it feels like the service has actually been taken away from me when I still need it.”
I know the pandemic is devastating, but by ignoring other illnesses and conditions in an attempt to fight the pandemic, they’re putting at risk one of the very groups of people that the lockdown is most intended to protect. If the needs of chronically ill people continue to be ignored, this pandemic will have killed people without even infecting them.
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I completely get this, it’s awful that others have suffered with Coronavirus but, when your treatment is sacrificed for another’s at such short notice, it can leave you feeling upset but also selfish.
I was luck recently when trying to get an appointment for a quarterly injection, they had had a cancellation come in for the next day. Had that not been available, it would have been weeks. I’m starting to worry about my next appointment to see my consultant which, albeit in October, I’m worried may be delayed due to a backlog. Thankfully I’m lucky, most of my clinic appointments are just weight, height, bloods and “how are you doing?”, which can all be done locally or over the phone/email so, if it does get cancelled/postponed, I’m not going to be too badly off; it’s other people I worry about.