Understanding Living with a Chronic Illness: What we can learn from the pandemic

Written by Diana Isabel Torres Goñi*

Photo by Sabrina Poirier

These have been a hard few months, but at last the bubbles have burst. Even if we still can’t rush into a movie theatre or go for a swim at the local community pool, we can exercise and visit with others, knowing we’ll probably be ok. For some of us, the lifting of restrictions is like a breath of fresh air. Others, however, face another reality altogether. 

For many of us, the last few months have felt like a bad dream, but for those living with chronic illnesses, this nightmare is something they have to live with every day. For them, staying indoors for prolonged periods of time, being extra cautious about everything that comes into the home and avoiding crowded areas is a daily reality. 

Sabrina Poirier, an independent advocate focused on chronic illnesses, lives with Myalgic Encephalomyelitis (ME). Sabrina, who is married to Julian L’Enfant from the Studio for Teaching and Learning, agreed to share some insight into how the pandemic has changed things for some within the chronic illness and disability community, and what changes she hopes it will bring. 

ME is a devastating multi-system illness usually triggered by a viral or bacterial infection and often causes those affected to feel chronic and debilitating flu-like symptoms, cognitive impairment, unrefreshing sleep, autonomic manifestations, muscle and joint pain and sensitivity to light and sound. Individuals with ME experience crashes (also known as post-exertional malaise) when they exert themselves physically or cognitively. Despite the WHO recognizing that ME was a neurological illness in 1969, there is still no available cure or approved treatments for ME, despite there being over half a million Canadians suffering from the illness. 

ME is very difficult to diagnose and it can take years for individuals to know what they’re suffering from. Sabrina’s case wasn’t an exception, and she struggled for years before learning what she had. Unlike for us during the pandemic shutdown, Sabrina had no support from the healthcare system during her transition into a necessary new way of life. She has had to grieve a thriving career in community development, her sense of autonomy and freedom, and her financial independence.

Covid-19 may have felt similar for some of us, but the truth is that the government, at federal and provincial levels, made available a range of options for people who were suddenly housebound due to necessary public health restrictions. The story for those living with chronic illnesses like Sabrina is different.

 For one, Sabrina shared that the kind of access to services that was quickly made available for the general public as result of Covid-19, is something that she, along with other advocates, has been pushing for many years. “Services like telehealth are incredibly valued by patients and caregivers, as they create a more inclusive environment that better meet the needs of those who struggle with mobility or other challenges, and yet there were very limited options before the pandemic started.” The pandemic seems to have shone a light on the much-needed accommodations for those who are mostly housebound, and hopefully the increased accessibility will remain after the lockdown has been lifted. 

The pandemic might also, hopefully, result in a newfound sense of empathy. Many of us healthy, able-bodied individuals have formed the misguided idea that staying home is enviable or easy. Well, not anymore! Now that we have experienced the isolation that comes with it, and the sense of anxiety that accompanies the threat of contagion, we may be better able to understand what those with chronic illnesses experience daily. For Sabrina, this has meant feeling a little less alone and she hopes “maybe more people will understand now just how hard it can be to be isolated for long periods of time. Maybe thoughtless comments like, ‘Wow, I wish I could stay home all day and rest too’ will now stop”.

Unfortunately, the government response has also made evident the other side of the coin. While the accommodations and grand-scale financial support granted by governments seem appropriate and even laudable, they appear to be only possible when those making the decisions are directly affected by the situation. 

“It's been hard to see how fast governments can move to accommodate their citizens if they deem them to be important enough. Sadly, individuals with chronic illnesses and disabilities rarely seem to be important enough to our governments to invest in effectively” Sabrina shares. “Many in our communities suffer EVERY DAY with a lack of financial security, a lack of access to services that meet our needs and a profound sense of isolation. Yet, we never seem to be a priority”. 

Even now, as the CERB, CESB and CEWB are in full swing and being extended for another couple of months, many people living with chronic illnesses are still being overlooked, despite their costs having increased significantly as they purchase supplemental sanitizing supplies, and deal with additional prescription and delivery fees. In fact, many individuals living with a chronic illness or disability were already living below the poverty line before the pandemic, and this situation has just highlighted the many inequities within our systems. 

It is no secret that seniors and those living with chronic illnesses are most at risk of fatally contracting the novel coronavirus, so logic follows it is them who must take the most precautions. For us healthy, young, able-bodied individuals washing our hands for thirty seconds, leaving the shoes at the door, and wearing masks only when shopping may be more than enough to keep us safe. However, for others, buying a bottle of alcohol spray, hand sanitizer and several boxes of bleach wipes may mean the difference between life and death. Things like wiping groceries and discarding the exterior packages, sterilizing household surfaces, washing shoes down with alcohol, and using facemasks when in public, are only some of the extra steps they will continue to have to take even when the majority of us have relaxed on that regard. Still, while their expenses have naturally increased, those living with chronic illnesses or disabilities are more often than not, ineligible for the financial support awarded by governments. 

 “Even in the pandemic, as our chronic illness and disability communities saw a significant increase in costs, we saw no financial supports being made available. Though many in our communities live close to or below the poverty line every day, we saw no concern for them. It was incredibly disheartening.”- Sabrina Poirier

The whole situation has been nothing less than stressful and anxiety-inducing, maybe that’s why so many of us have suddenly become Olympic-class athletes. Look out your window and you’ll probably find more people going for a run than what is usual, and honestly that’s a better alternative to shoving down a pint of ice cream. I, for one, really appreciate being able to continue working out and releasing all the pent-up energy that is no longer needed for work or school (sitting in front of the computer just doesn’t burn as much calories as running to class after spending a bit too long making that cup of coffee to go). Exercising has allowed some of us to cope with the mental toll Covid-19 has had on us. We’re lucky we get that too. Not everyone does. 

Sabrina Poirier, independent advocate

People living with ME, like Sabrina, have much lower energy levels, and physical and cognitive exertion can deplete their energy and lead them to crash severely. Sabrina mentioned that after she got sick, she realized just how much biking, swimming, hiking, yoga and being in nature had helped her process things emotionally. When that was suddenly gone, due to her illness, she was left trying to figure out how to process those feelings effectively. Sabrina is very much aware of the value of exercise as a positive coping mechanism and shared that she empathizes with everyone who is going through this experience of anxiety and isolation for the first time and hopes that it can lead to more understanding.

“I would hope that if I have a conversation with somebody after this and say, “I miss my career or I miss being able to get out with my family more”, maybe that will now trigger empathy instead of stigma or judgment,” says Sabrina.

My only hope in writing this article is to open up the conversation, to bring forth her experience and hopefully create more understanding. Now that we’ve had the smallest taste of what those with chronic illnesses go through every day, then maybe we can empathize, and support their call for increased accessibility and universal basic income. 

We don’t have to go too far to start supporting the chronic illness and disabled community, we can start at our own university. We can ask our students, faculty and staff living with chronic illnesses and disabilities what they would like to see changed and we can use our voices and platforms to support those changes. 

Although you may feel like we’ve experienced what those with debilitating chronic illnesses live through every day, the truth is we’ve only had a small taste of what this is really like. We have gone through it at the same time as our family and friends and we have had the support of our governments. 

When asked if she thought that the current situation will lead to changes in perceptions about chronic illnesses and disabilities, Sabrina explained that although she hopes for this to be true, she is still afraid. She worries “that society will want to move on from this period as quickly as possible and in doing so will forget about us once again. In fact, they may avoid us even more because our continued isolation and health struggles may serve as a reminder of their own Covid-19 fears or experiences”. 

As we slowly transition to a less-restricted reality, it is important that we continue to support access to telehealth, sufficient financial support, dedicated shopping times and curbside pickup options, and most importantly we must stop advising individuals with chronic illnesses and disabilities to look on the brighter side of things when we truly don’t understand their experiences.

*The Journal wishes to thank Sabrina Poirier for her collaboration on this article

Thumbnail image from Unsplashed.com