The issues that disabled and chronic condition communities face as a result of the pandemic are being ignored too easily.
The disabled and chronic condition communities have been deeply affected by the pandemic. But little is being done to acknowledge, discuss, or support the difficulties they face.
Despite the emergence of the Omicron variant and increasing awareness of long COVID, we have seen — now more than ever — a greater dismissal of COVID-19 and the risk it still continues to pose for many people living with a disability or chronic condition.
Below are some of the issues that have impacted me and others within these communities.
Living with a disability or a chronic condition can be an isolating process. Many report feeling lonely, with symptoms often preventing them from leaving the house or socializing.
The pandemic has made this an everyday reality for many.
But stay-at-home orders and lockdowns have often been in place for much longer for those with chronic conditions. Many are forced and continue to choose to stay at home to avoid further risk to their health.
Those living with a disability or a chronic condition are often expected to stay at home as a necessary sacrifice, rather than considered in policy and protection procedures.
Many people have reported struggling with their mental health severely over the lockdown period.
The chronic condition and disabled communities continue to face the mental health difficulties that come with isolation and COVID-19 risk, as well as those associated with symptoms, pain, appointments, medical trauma, societal stigma, and more.
“Since the pandemic started, I have been diagnosed with multiple chronic conditions. I’ve found that a lot of people are less inclined to support disabled people during this time. With the slower times, businesses have been doing repairs and renovations that, unfortunately, have led to ramps and other accessibility options to be closed or unavailable. It’s really taken a toll on my mental health, as has the isolation.”
The lack of trained services for disability and chronic conditions also prevents these communities from accessing appropriate support.
Many people have faced and struggled with financial uncertainty due to loss of work.
These issues are more likely to affect someone living with a disability or a chronic condition, as these communities are already far less likely to work due to symptoms or discrimination in the workplace. The cost of living is also often higher for these communities due to medical and other costs.
Before the pandemic, adjustments were often denied to those living with disabilities or chronic conditions, including working from home, and online meetings, medical appointments, events, and more.
The pandemic proved that such measures were possible without a high amount of complication and paperwork. Now, many report that these measures are being revoked — when they could easily continue to stay for the communities who benefit from them.
One of the hardest things for those living with a disability or chronic condition has been the postponement and cancellation of their appointments, treatments, surgeries, and medical care.
This has meant that many with diagnosed conditions have had important treatment plans put on hold and found it much more difficult to contact their doctors.
For those undiagnosed and searching for answers, this has meant that misdiagnosis has become more likely as services are strained and facing a backlog, postponing necessary tests for months.
As a result, these conditions are likely to worsen, progress, and become a greater risk to someone’s life and health.
“I already live with multiple chronic illnesses, but during the pandemic I started developing new symptoms. However, due to the difficulty in accessing medical care, and the backlog of appointments, I remain undiagnosed and am still waiting months to have appropriate tests. These symptoms have worsened and continue to progress weekly; it is really scary to live with these at a time where every appointment I go to could mean me catching a virus that could kill me. I feel so upset to see that people do not try to understand our perspective in this.”
Moreover, those who rely on carers and care services to have their basic needs met have found it much more difficult to access these or receive care within their home. This type of care is essential to their survival and day-to-day living.
Students have suffered in many ways during the pandemic. Students living with a disability or a chronic condition face even more barriers when integrating with the new student community, meeting people, and learning new skills.
This is because, as universities open up again, many students who may not feel comfortable with the relaxation of COVID-19 protections will find it more difficult to mix with others, especially when many online events and accommodations are being taken away.
Long COVID patients currently receive similar treatment to those with many other conditions like fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome, Lyme disease, gynecological issues, endometriosis, and more.
These conditions are lacking in treatment, medical and societal understanding, and are often surrounded by stigma such as “it’s all in your head” or “you just aren’t trying hard enough.”
Long COVID is a perfect example of the lack of conversation concerning disability and chronic conditions in the media, as it has only briefly been covered by mainstream news. This needs to change, as these are very real issues we should not be ignoring.
All of these difficulties — the prolonged isolation, worsening mental health, financial uncertainty, a lack of persistent flexibility in new accommodations, difficulty accessing healthcare services, and new challenges for students and long COVID patients — have all contributed to and exposed some of the worst attitudes toward chronic conditions and disability in society.
Throughout the pandemic, the idea was perpetuated that the lives of those with disabilities or chronic conditions are worth less. An underlying and persistent attitude has continued to suggest that our isolation and possible death is a sacrifice necessary for learning to live with COVID-19.
A UK government study found that use of the term “clinically extremely vulnerable” left many feeling embarrassed and even guilty about their identities.
The societal attitude that those living with disabilities and chronic conditions are disposable and forgettable is constantly reinforced without being refuted.
It’s very difficult and upsetting to witness this — and exhausting to try and explain to others why your life is still valuable and worth considering.
“I was diagnosed with an autoimmune disease and fibromyalgia during the pandemic and started immunosuppressants. I went from being deemed ‘healthy,’ to hearing constantly that my life isn’t important due to my ‘multiple comorbidities.’ I’ve had to deal with the grief of losing my old self, while healthy people ignore the rules. I’ve had to deal with the isolation and fear for my life while others take theirs for granted simply because it doesn’t affect them. It has been exponentially terrifying to adjust to being ill while living in this new pandemic world. Fear is my baseline now.”
People living with a disability or a chronic condition have, at times, been painted out to be a group that wants COVID-19 restrictions in place 24/7, with all businesses shut, no socializing, and lockdowns all the time.
I don’t want that. And others I have spoken to don’t want that either.
We just want people to take careful approaches where necessary and be mindful about how their actions may indirectly affect others.
We also need far more awareness surrounding the impact this pandemic has had on different communities, more open conversations, and more efforts to provide support to them.
It’s important to remember the resilience these communities have shown throughout the pandemic, and how raising our voices about some of the hardships faced is just one of the steps needed to make change.
*All quotes were collected from social media and shared with permission. Names have been changed to protect the identity of individuals.
Fact checked on March 23, 2022
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