What’s Life Like with Chronic Illness? Lessons from The COVID-19 Outbreak
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What’s it like to live with a chronic illness like Multiple Sclerosis? People ask me that often, but especially during March which is MS Awareness Month. Well, it’s not something I’d ever want you to experience first hand that’s for sure. Please know, I also don’t intend for this blog to make light of the current COVID-19 pandemic in any way.
If you’re interested in truly understanding some of the struggles the millions of people living with chronic illness battle each day, sadly, you may be unknowingly experiencing some of them now as a healthy person.
“I truly believe that this pandemic is a great opportunity to start looking at practicing safe health and disease awareness from an outside perspective.”Britt Quiroz, A Hot MS
You’re Super Bummed Because Something You Were Looking Forward to was Cancelled
Having things that you’ve been planning to attend be canceled after putting time, money, and energy into preparing for months in advance freakin’ sucks. I know. I get it.
Unfortunately, it happens to many of us with unpredictable chronic illnesses more frequently than not. That disappointment, frustration, FOMO, and sadness you’re feeling? We get that a lot too. It doesn’t make it suck any less, but it’s par for the course with chronic illness.
We often look flaky to family and friends, but please remember this feeling next time we cancel on you for something. Know how badly we wanted to be there, and how bummed we are to miss it, and mostly please don’t hold it against us.
Not Getting to Leave Your House Sucks
CDC officials are currently recommending ‘social distancing‘ here in the US. And self-quarantine for high-risk individuals like myself (my Disease-Modifying therapy that’s designed to slow the progress of my MS is also an immune suppressant). That means more people are working from home (I’m grateful I have that opportunity), staying home from school, not going to unnecessary appts or hanging out with friends. So while you are of course allowed to go outside, you may feel a little stir crazy already. I know I do.
Sadly, this is something those of us with chronic illness go through often as well. I often have spasms that prevent me from driving and walking long distances, plus I have chronic fatigue that makes even taking a shower hard let alone actually leaving my house. And as an extrovert who loves to be around people that really sucks.
I was only diagnosed with MS four years ago, so I do actually remember what it’s like to be able to do more than one activity in a day…but damn that’s nearly impossible for me now.
Every time I do manage to leave my house a ton of thoughtful planning goes into it and I have to weigh the pros and cons of going vs. staying home. For a healthy person, a short trip to the store may not seem like much, but if I go on a busy day it may worsen my fatigue for two days. Visiting with friends is always a worthwhile reason for me to get out, but I have to weigh the possibilities of how much I may ‘pay’ for it in added fatigue, pain, exposure to illness, etc.
I bet you’re thinking about how you can avoid crowds at the stores and missing in-person social interaction, huh? Unfortunately, that’s a daily part of chronic illness life.
You’re Bombarded with Information and You’re Not Sure What to Trust
Social media is a freakin’ gift. I love it. Not only is it the way I do business, but it’s also helped me stay in touch with family and friends when I can’t get out. Plus, social media has helped me connect with new friends who understand what I’m going through with chronic illness.
But social media can be stressful, overwhelming, and downright misleading too. Especially when I was first diagnosed with Mulitple Sclerosis, but even now, I was sent a LOT of messages from well-meaning people who wanted to help me.
I read a lot of blog posts on how so and so ‘cured’ their MS with diet, exercise, or some special vitamin mix. Surprise, I’ve tried many of them, and yet I’m not cured. Now, I only take the advice of my trusted team of doctors.
Now, we are all seeing Covid-19 protection tips and memes online that tell us drinking hot water will kill the virus (not proven, friends, sorry). Plus, photos of bare store shelves are causing panic buying. Tragically, we can’t even trust our own President to relay facts and recommendations from the Center for Disease Control publicly.
Everyone’s Judging Your Choices
If you’ve already canceled your summer trip you’re being too cautious. If you’re young, healthy, and taking advantage of those travel sales, you’re being irresponsible.
Someone always has something to say about how to live our lives with chronic illness. It’s a delicate balance of not letting it control us and listening to our bodies. It’s not easy, and judgment doesn’t help anyone. Please remember to practice kindness, because you never know what someone is going through. Now, and in the future too.
Your Anxiety and Depression are HIGH
This as anxiety-inducing times. Not being able to see loved ones, not having control over many situations, and missing out on things you were looking forward to can increase depression.
Having dealt with depression most of my life, I know that I feel better mentally when I get out more myself. Anxiety is a new symptom that I’ve acquired since my diagnosis (gee, thanks MS), and it’s hard not to be anxious when you live with an incurable and unpredictable disease that affects your entire body.
Unfortunately, now many people who never experienced anxiety and depression may be triggered by the current pandemic. Consulting with a therapist (I use and recommend Talkspace for online therapy!) and reaching out to your family and friends virtually has helped me. Plus, my dog dixie is a great comfort to me during stressful times. No, it’s not the same as being in-person, yet if there’s one thing I’ve learned about having a chronic illness, it totally sucks, but the community support is amazing.
Finding a way to give back, even during these scary times, also has helped me. I’ve become a outspoke advocate for others with chronic illness, and if you’re interested in learning more about advocacy, that’s something you can read about here.
Hold on to Hope
Since my diagnosis, my mantra has become “Life’s Hard, Find Joy Anyway”. While I’ve had many tough days that I never thought I’d get through, here I am. Holding on to hope, finding joy in the small things, and relying on my support system have been critical in helping me to continue to enjoy my life. As Martin Luther King Jr said “We must accept finite disappointment, but never lose infinite hope.“
During this Covid19 pandemic, and always, my wish for you is to stay healthy, safe, and to please take away some lessons on empathy, kindness, and the importance of community from this terrible situation.
How are you dealing with the Covid19 crisis? Stay tuned for my next post with the strategies that have helped me get through my darkest days and isolation due to my illness.