Fear and Hope: The Hidden Realities of Being Chronically Ill In the Time of Coronavirus

 

Right now is especially hard on those of us who are sick already. The safety nets that each person has – medical care, social support, financial security, and access to basic necessities, among others – are being sorely tested at this time. But the individual safety nets of people with chronic illness are already weakened, and when you add a pandemic, they fray even more. We have to hope and pray that they hold.

Spring. It’s a beginning. More than that, it’s a beginning that starts in the cold and the dark. In the middle of winter, it’s hard to believe spring will come. But it does. I’ve taken photos of spring flowers to remind myself of that fact.  I hold on to the fact that the deep resilience and strength that everyone with a chronic illness has developed will help to get us through this time.

Physically, the risk of getting coronavirus has higher stakes for the chronically ill. Even if you are not immunocompromised, the fear of getting a terrible illness flare up, or setback is real. A cold virus once caused me debilitating fatigue for months, so of course I worry what coronavirus could do. My husband worries even more on my behalf than I do!

The financial crisis ahead will disproportionately hurt the chronically ill, who are far more likely to be underemployed or unemployed than the non-ill. I feel lucky my husband’s salary can support both of us, since I can’t work, although things in a single income family are often tight. But for years, many of those with chronic illness have lived in poverty on inadequate government disability assistance. Suddenly, the government has found the resources to give individuals who have just lost been laid off because of covid-19 as much as double the amount allocated for disability benefits. 

To be clear, I don’t begrudge anyone who has recently gotten emergency government financial assistance due to coronavirus. That’s the right thing for our governments to do, and in fact, they should give more than they are. But when the chronically ill and disabled get half as much on a regular basis – an amount that is below the poverty line- it feels like our governments are saying people like us are worth half as much. Meanwhile, many are still trying to get by on the inadequate amount given as disability assistance during the lockdown without any additional supplementation. 

We’re still living in an ableist world  in the time of coronavirus. There’s no way that I can stand in line for half an hour or longer to buy groceries or pick up prescription refills on my bad knee. But God help you if you want schedule grocery delivery. There are no times available, for love or money. My husband is able to try and shop around his work schedule, and I’m lucky to have that help, when others are on their own. In some cases, neighbours and strangers have stepped up to help out the chronically ill who iive alone, and that increases my faith in humanity a little bit more.

Like so many, all of my appointments and procedures have been cancelled. From monthly physiotherapy that helps to bring down regular flare ups, to a long scheduled nerve ablation that is supposed to reduce my neuropathic back pain, all of these pain management tools are now on hold and I’m trying to make do the best I can.

I won’t lie, it has been harder to sleep, which triggers more flares of pain. I feel more irritable, especially if I spend too much time on the news or social media. Regulating my news diet helps to bring some of the stress down. It’s just not feasible to try to worry about every corner of the world at once!

At the moment, it seems like everyone and their grandmother are having Zoom chats with all the people they’ve ever known. If I read one more post about how wonderful all this reconnecting is I think I will get an eye twitch.

Chronic illness is isolating for most of us. When you cannot regularly meet up with friends or join community events or chit chat with neighbours at the dog park, then your social support system shrinks. I’m fortunate to have a couple of good, old friends who have stuck with me. And since I’m old school, I skype with them on occasion (sorry, zoom!).

But I’ve lost a lot of friends and family members along the way. It’s hard to think about the people who were more fair weather friends at a time like this when we could have been there for each other.

That being said, I’ve learned to embrace solitude more over the years. This is the time for distraction therapy: writing, knitting, painting or whatever creative pursuits you have wanted to try. Or maybe just appreciate the creativity of authors, actors and musicians by reading, watching shows and listening to music that you’ve wanted to check out but haven’t had time until now. Here’s a list of my favourite free distractions to help you make the most of this time, despite the pain and fatigue.

Frustratingly, I had just started going to a local library book club before the pandemic hit and had found a new local fibro group I was hoping to go to. Looking forward to book club got me through some difficult days- thinking, “well, at least I’m living a little”. Same with going out to a cafe once in awhile with an audiobook, ted talk or an online course lecture. Those small things helped me to regulate my feelings about chronic pain- counterweights of connection and enjoyment to the isolation and limitations of illness.

Now though, that’s not possible, or re-creatable. When bad days hit now, it’s hard to know what to turn to other than a lot of distraction. Fortunately, there are some excellent online support groups, like Medical Musings for Friends on Facebook, or the general chatter of #chroniclife #spoonie #chronicpain #fibromyalgia on Twitter.

I hold on to the hope that this season will pass and a new spring will bloom, when we will be able to access the treatments and supports we need again, and build the relationships we want. Now more than ever, I value the strength I’ve gained, my current relationships (IRL and virtual), and mindfulness of simple enjoyments, like spring flowers, that I can savour. I hope I can carry the intention to focus on these things into the next season, post-coronavirus. We have strength forged by surviving our illnesses, and we can trust in our own tenacity and resilience during this time. Self-compassion and kindness can also go a long way right now. We need to give ourselves a break at present, since we’re all just muddling along trying to figure this thing out the best we can, one day  at a time.