It has been year since the World Health Organization declared SARS-CoV-2/COVID-19/The Coronavirus, a global pandemic. Since then, more than 118 million people have been infected worldwide, and 2.7 million have died. One of the groups of people that have been disproportionately affected by the pandemic, whether because of a COVID-19 diagnosis, or because of the restrictions put in place, are those who are chronically ill/disabled. Whether it is because of telehealth shortcomings, pain/quality of life treatments being delayed, or the very real fear of catching COVID-19, people in need of regular “maintenance” health care to manage their conditions feel discarded.
Mira Krishnaswamy, a 20-year-old with a chronic illness, said about the pandemic, “I was diagnosed before the pandemic started, so it was really difficult for me, at age of 19, having to go to the cancer center by myself and having to go through every single medical step with nobody by my side to support me, as the pandemic made it so nobody could go into the hospital with you. It was also really isolating because it broke my heart to see so many of the people I used to call “friends” not listening to the CDC and going out and partying. Because I am chronically ill, I am immunocompromised which meant that this pandemic literally threatened my life every single day. I could not leave my house for fear of my life. Seeing “friends” partying or not caring about the pandemic felt like a knife to the back because their actions can directly kill me. It essentially meant that they did not really care if I lived or died.” Krishnaswamy also spoke about how the “stay-at-home” order affected her mental and physical health, “Because of the pandemic all medical services were shut down for a while. This was horrible because I was doing upwards of 10 medical appointments a week. This was hard on my body mentally and physically because I was unable to get the medical care I needed for my chronic diseases for months at a time. I was literally bed ridden. I have ended most of my friendships with people that did not take the pandemic seriously because it was clear to me that they did not care about anyone other than themselves and did not care for my health or the health of others who cannot control their bodies. I also had to move mid-pandemic because I had spent the first half of the pandemic stuck in the house with an abusive step- parent. I do not think people understand how horrible it is to be stuck self-quarantined with an abuser.”
Mackenzie Lea, a 23-year-old from Alberta, Canada spoke about being chronically ill, and dealing with the randomness of Trigeminal Neuralgia pain before and during the pandemic, “I am no stranger to isolation and unpredictability. Being chronically ill, my life has been upended a number of times. I have spent the last 7 years of my life locked away indoors, avoiding some of life’s greatest offers, as they stand a chance of causing me excruciating pain. I have missed out on work, school, time with friends and family, and events that I have really looked forward to. The terrifying truth is, I never know when I am going to be in pain. There are days where I can handle multiple tasks and there are days where I am completely bed bound. There is never a guarantee of being able to do things that I have been planning to do for months. When I try a new treatment, there is no guarantee that it will work or that it will not cause me to have debilitating side effects. That kind of isolation and unpredictability is devastating, and it takes an enormous toll on your mental health. When COVID-19 hit, I was undoubtedly fearful, but I also felt prepared. Lockdown is like how I have been living for years and as an optimistic person, I was actually hoping that this would foster empathy for the disabled experience. I was excited to give people tips on how to navigate isolation and unpredictability. For the first few months, life did not feel all that different. I was going out less than I usually did, but I felt more connected. With everyone locked down and programs like Zoom coming into popularity, the ability to connect became easier for me. I was talking to friends and family more than I had in years. Delivery services became more efficient, and many stores adopted hours where vulnerable people could safely come and shop. Workplaces and online school accommodations came about, and the world felt more accessible and approachable. However, as happy as I felt about all of this, it was also a bit angering. I am not the type of person that is going to complain about these immense strides, but disabled people have been asking for these accessible options for years. I left school and work because they could not accommodate me and it’s frustrating to realize that it was actually quite a simple fix and just a lack of effort.”
Mackenzie also talked about how her treatments have been affected by COVID-19, “As time has gone on, I have definitely started experiencing a decline in my mental health. People in my area are constantly protesting lockdowns and masks, our government is acting very slowly, and our numbers continually skyrocket. I do not feel safe anymore. I have heard so many people say things like, “if you’re scared or at risk, just stay home”, but that is not an option for me. I have to leave my house to go to medical appointments; I cannot get infusions at home and I have a port in my chest that requires maintenance. My specialist has temporarily switched to a Covid unit, so my care has been transferred to stand-in doctors and nurses that are not familiar with my rare disease. Delivery fees have become more expensive and being someone that is on a limited Disability budget, I cannot always afford to get things delivered. I have had to alter my already strict budget to include things like masks, gloves, and cleaning products, so I have no room for tips and extra fees. My pharmacy is running so low on one of my medications that I had to temporarily switch to something else. Not only did I have a reaction to the new medication, but it is also more expensive. I feel like I am simply surviving instead of living sometimes.”
While people living with chronic illness and disabilities are at a higher risk of contracting COVID-19, we also know from their stories that the pandemic has affected their mental health and their quality of care. For more information about chronic illnesses, and the COVID-19 pandemic, go to https://www.cdc.gov/ and/or https://www.hhs.gov/.
