#WorthSaving: Navigating Chronic Illness, Mental Health and Media Consumption in Coronavirus Times
“It’s only dangerous for the most vulnerable”. You’ve probably heard someone, whether you know them personally or not, justify their lack of concern over the Coronavirus pandemic in this way. While technically true, this seemingly innocent sentence carries a much more dangerous idea: one that says that the most vulnerable are little more than collateral damage. This has been going on for too long, and they won’t stay silent any longer. Despite what some might think, they are #WorthSaving and always were.
“In the event of a sudden deterioration in your condition because of Covid19 infection or disease progression, the emergency services will not be called and resuscitation attempts to restart your heart or breathing will not be attempted.” This is a line that severely ill patients of Llynfi Surgery, a surgery clinic in Wales, had to read in a controversial letter urging them to file a “do not resuscitate” form if they were to contract Coronavirus. The letter, which leaked on Twitter to appalled reactions, cited the lack of hospital beds and ventilators as a reason for their most vulnerable patients to give up on their right to healthcare.
While the Welsh surgery clinic has since apologized, this letter still highlighted an issue that few have been taking into account in the midst of this crisis. The elderly, seriously ill, and those with respiratory issues are just a few of the most vulnerable to this virus – and yet, they are continuously ignored, or treated like collateral damage at best. A few weeks ago, the Instagram campaign #WeAreTheVulnerable gave an opportunity for those most affected by the spread of the virus to speak up and urge those that weren’t taking social distancing practices seriously to think about the way their actions affected those around them.
As a response to the letter, the mental health and disability blogger @budtobloom_ started another hashtag: #WorthSaving. “I am at high susceptibility risk for contracting the virus, and if I developed it I doubt I’d survive, thus would require a ventilator,” reads the young woman’s Instagram caption. “The letter sets a precedent that our lives aren’t worth saving, that the lives of able-bodied people are worth more, because we are disposable. We are #WorthSaving. We are human.”
Both #WeAreTheVulnerable and #WorthSaving show how complex life under the Coronavirus crisis as a vulnerable person is. On one hand, staying up to date on the latest developments of the pandemic is a necessity to keep safe and avoid catching and spreading a potentially fatal disease. On the other, constantly receiving messages that your life isn’t worth saving, whether it is by seeing people document their disrespect of self isolation policies on social media or reading even respectable media outlets reducing their potential deaths to collateral damage, is without a doubt detrimental to mental health.
So where is the balance, if there even is one? How do you preserve your physical health and your sanity? In times of distress, social media likes to throw around buzz words on how to calm down: take care of yourself, make a bubble bath, read a book, go for a walk. But the reality of living with a chronic condition means that life under lockdown may look very different than what ordinary people may imagine, and that generic advice rarely ever cuts it. Exercise might relieve stress for some; but for others, it could make chronic pain go from manageable to unbearable. For some of those stuck at home, productivity could mean taking on a new hobby, learning a new language, starting a side job. For those living with chronic conditions, productivity can sometimes simply mean getting out of bed.
There lies the heart of the problem: no two types of pain are the same, and therefore, no advice can be said to broadly apply to everyone trying to navigate the complex intersections of physical and mental wellbeing while living as a chronically ill person under a global pandemic. It seems unfair that it is precisely the most vulnerable who have to work the hardest to make themselves a safe space while this crisis is happening – but if living with a chronic condition can consistently teach one thing, it is that life isn’t always fair.
So what is the correct reaction? What will be the best way to react to this crisis? There is no single answer, nor will there ever be. This might mean taking a break from social media, instead asking friends and family for updates from official health services, limiting the risk of getting into a never ending scrolling session. Or on the contrary, this might mean taking parts in social media movements like #WorthSaving, and trying to raise awareness about your current struggles and how the way people’s words and actions are affecting you. You can switch from one to the other, or find your own completely original way to deal with this unprecedented situation. In the end, we, and every other publication and journalist, can try giving all the generic advice we can think of – but the only right way to go about this is the one that’s right for you.
As for those who have the chance to not be as vulnerable to the virus, the least we can do is listen – and try to remember how much of a chance it is to have a healthy body in these uncertain times. Mary-Beth, author of the food blog Heart of Celebration and fighter of Fanconi Anemia, a rare genetic disease that affects the bone marrow and makes its sufferers extremely vulnerable to the development of leukemia and tumors, reminds her Instagram audience that staying home is the least healthy people can do to support their vulnerable counterparts.
“This isolation will end for you,” her Instagram post reads. “In a month or two months. But we will remain in isolation for far longer. Until there is a vaccine. So six months? A year? Life outside my door will be a danger to my life. But you. You will be able to hug your people, and go to happy hour, and go to the movies. And maybe that time seems interminable to you. I don’t minimize that. But for so many of us, this world will remain for unsafe for much longer.”
Mary-Beth’s post touches on an important part of this subject – we may all be in isolation for now, but it certainly does not mean the same thing for all of us. On that note, Rachel, a 20 year old university student using her Instagram account to talk about her experience with fibromyalgia and raise awareness around this chronic pain disorder, reminds us to be mindful with our words, and more specifically not to compare your current experience of self-isolation at home to the daily experiences of people who are housebound due to their chronic conditions. No one is denying that this is a hard time for everyone – but this may also be the right time to be more compassionate towards those that won’t go back to what you may consider a “normal life” once the lockdown comes to an end.
“I feel people are getting a glimpse of what many people’s daily lives are like,” writes Rachel. “Two weeks in and there’s so much negativity surrounding self isolation. Once self isolation is over, their life is going to go back to normal, yet so many people will still be housebound due to their illness. All I ask is for everyone to be considerate and realise the reality of chronic illnesses. I feel it’s an eye-opening experience for many and an opportunity to raise awareness for chronic illnesses.”
People suffering from chronic conditions are often left out from healthy people’s perceptions of what a normal daily life is. If you’re not at high risk of contracting Covid-19, try to take this opportunity to truly listen and amplify activist voices in the chronically ill community. We may not be able to see each other struggling physically, but adding chronically ill activists such as the ones we mention in this article in your social media feeds, paying attention to your words and following health guidelines are ways that you can help those that are in more danger than you ever thought you could be. You can also take the pledge to #ProtectTheVulnerable and try to spread the message among your friend and family circles. And don’t forget that what you are living through is just a glimpse of what housebound chronically ill people deal with on a daily basis – use this time to reflect on how you can support them better once the lockdown ends instead of going back to your old ways. Ignoring these problems may be easier than confronting them, but chronically ill people will be just as #WorthSaving when you’re able to go back to your routine than they are now.
And if you are a vulnerable person yourself, remember that trying to convince other people that you are #WorthSaving is only worth it if you have the mental and physical strength to do so. This may feel like difficult advice to accept, but you will always need to save yourself before trying to save anyone else. Be mindful of the way you feel during these days, and change your habits accordingly. We’re all #WorthSaving. Just make sure to remember that you are too.
