Resilience is accepting your new reality, even if it’s less good than the one you had before.
You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.
I received a message recently from one of our community who is immunocompromised – as many of us are. She wrote:
I am thinking you may have already covered this before but I am struggling greatly with having to be so careful about where I go and what I do so that I can avoid getting sick (auto immune club member right here). It angers and saddens me to see other people going about their lives having fun as if COVID doesn’t exist. It makes me feel like a terrible person for feeling this way but I’m sure I can’t be the only one out there who is struggling with these feelings. A post about this would be welcome relief as you always have practical solutions.
So, here is my response, and my thanks to our reader who raised this very important issue.
Hi, friend. First let me say that you are definitely not the only one who is struggling with those feelings. I would LOVE to be going about my life the way I did pre-COVID, where I could dine out, go to the movies, go to a concert or festival, sit in a doctor’s waiting room, grocery shop, attend farmers’ markets or invite friends over, or go on holidays – all without having to unduly worry about my health. It frustrates me, and it gets me down sometimes. I get it. I understand how you feel.
The world has mostly moved on, and the majority of people have gone back to their daily work and social lives as if COVID no longer exists.
But not us.
Also, for many of us who are immunocompromised, the choices we had during lockdowns (or when things were not as open as they are now) were actually better for us, and gave us more options. Now, our choices are fewer, and the risks greater.
Understandably, everyone is eager for things to get ‘back to normal’, and in the rush to do so many people have forgotten that a section of our community have been left behind. We are out of sight and out of mind because we have become less and less visible as we mitigate our risks by staying home, and by socially distancing and masking up when we are out.
So, how do we manage?
Firstly, it’s okay to acknowledge that this situation sucks.
It does. It’s not our choice. It’s awful. Few people understand.
Our lives have shrunk. We have become more isolated. Some of our community no longer even feel safe in their own homes. For us, things aren’t looking anywhere near normal and are unlikely to be for some time. It’s okay to grieve that, and to feel the pain of that loss.
Secondly, for our own peace of mind and wellbeing, we need to come to terms with what is.
For now, this is how our lives look. There is no point raging against that, or calling it unfair. Anyway, who in the chronic illness community has the energy for that?
Maybe life won’t EVER go back to how things were pre-COVID, so we need to work out how to make the best of the crappy hand we’ve been dealt.
The way I have coped so far is this:
- I have set boundaries that are clear and we practice keeping those boundaries. For my husband and I that means no house guests or social visits in our home, and anyone who does need to come to our home (such as tradespeople) must mask up and socially distance. We weigh up those visits very carefully.
- I have looked for opportunities to leave the house that carry a low risk. These include picnics, going to the beach, going for drives, enjoying take-away coffees and food in parks or other outdoor spaces away from people, going to the local Sunday farmers markets just as they open at 6am and masked up, or going to our grocery stores late at night or very early in the morning – still masked up and being careful. If I go into a business I go at low crowd times, or phone ahead to let them know about my health issues. I have had several local businesses open up early just for me, so that I can shop or obtain services with less risk – and that feels amazing.
- I have nurtured my online relationships and friendships, and make sure that I am connecting with family, neighbours and friends in ways that keep me emotionally connected and plugged in. I have a small number of ‘safe’ people and locations where they are also observing strong COVID protocols. That helps too.
- I have found interests and projects that are meaningful and that will keep me busy.
- I do my best not to dwell on all the things I can’t do and can’t change. It only upsets me, and what’s the point of that? I learned this long ago, as someone with chronic health issues – accepting my situation and surrendering to it instead of fighting it makes my days happier and less stressful.
- I don’t engage with people whose views are ignorant, militant and/or who aggressively challenge people like me who need to manage our risks around COVID (and the flu and every other contagious pathogen). It’s exhausting and I will never change their perspective, so best to save my energy for worthier things.
I also feel into positive feelings for all of the people who CAN go about their lives again: how lovely it is for them and their families, how great this is for business, and for rebuilding emotional and financial wellbeing. How wonderful that kids and young people can get back to being together and sharing their lives. I encourage you to think of people you care about who are able to access normality again, and do what you can to be grateful for their opportunities.
I KNOW that a percentage of everyone who gets sick will end up with long COVID. It’s a game of Russian roulette. It’s a numbers game. My old life has already been destroyed by chronic illness. That bomb has already gone off for me. I have a great deal of compassion for those people going back to normal who won’t know it was better to avoid the virus until it’s too late. Additionally we have several friends who have now caught COVID more than three times, and who have gone from it being barely a mild cold to now having permanent organ damage, cognitive dysfunction and loss of lung function. I know that people are acting like the threat is gone, but the threat is still real. It’s just that everyone is COVID fatigued, so they’re taking more risks and worrying less. I already have enough problems. I don’t want to add to them by adding COVID to my mix.
One other thing. I take comfort in science. Right now we are managing COVID better that we did in the early days. There are some very promising treatments and vaccines in the pipeline, and with the incidence of long COVID there is finally attention and research happening that may make my own life better. After all, long COVID looks very similar to many of the conditions we have suffered silently – and often without recognition, adequate diagnosis or treatment – under the mantle of chronic illness, chronic fatigue and autoimmune conditions. So, eventually, things will change. I remain hopeful.
So, yes, it sucks. We need to dig deep, build our resilience and find ways to make peace with what is. But it IS possible to be happy in the midst of all of this, and to find ways to make life meaningful.
I hope this post was in some way helpful for you.
I’m thinking of you, and everyone in our community who is directly or indirectly affected by our need to remain separate from the crowds of people going ‘back to normal’.
Much love, social distancing, hand sanitizer, hand washing and masks, Nicole xx