I tell people all the time that my life was probably the least affected by COVID compared to others in my world. I know people who have lost jobs, been forced to move, lost family members or friends, are frontline workers. But me? I’ve been homebound with my parents for the last 2.5 years due to chronic illness. I have 2 genetic mutations, 5 autoimmune diseases and a plethora of other ailments that have me frequently hospitalized (over 10 times in 2020) and cause me such distress that I am bed bound a lot of days and live a very different life than my friends or a “normal” 24 year old. My life is focused around my health right now and that’s okay. But, this past year others were able to see a little more of what my life is like and walk through some difficulties that I face everyday. I think if there was anything good to come out of quarantine, it is this. People have a small glimpse into our world: being isolated, unable to leave your house, for some that means no more job too… and away from people, away from companionship and normalcy. Having to actually think about your health and put plans in place for when something happens and you get sick. To us “spoonies” (chronic illness term about how much energy you have), this is our everyday. We are constantly thinking about our current flare up or stressing out about when our next one will come. We are lonely because we haven’t left our 4 walls in x amount of days. For some it’s been months and for others it’s been years. So this is one of the biggest ways Covid has changed life for the chronically ill… it’s just opened other’s eyes.
I know I said my life has been the least affected, but there are some parts that are actually really complicated and hard that Covid has brought on. I said that I was hospitalized over 10 times in 2020. All of those times, I was completely by myself. Scared, lonely, exhausted… sometimes my admissions were for days and sometimes they were multiple weeks. I went under anesthesia three times, alone. Because of Covid, my hospital (along with most others) stopped allowing visitors. So my parents get me out of the car, put me in a wheelchair, hand me to a nurse, and from there I would go into what I call some of my darkest days. It’s not only the loneliness and lack of comfort. It’s the fact that you always have to be “on”. What I mean by this is that anytime a doctor, nurse, admin, anyone comes in your room, you have to be awake and be able to carry on a conversation with them about what is going on. There are many times I have been so sick I’m unable to speak. Thankfully, my body usually does the talking for itself but pre-covid, my parents would talk to the doctors while I’m sleeping or help talk to the nurse for me. So this was the hardest challenge last year. But it forced me to grow and become far more independent in my self advocacy and health. And for that, I’m grateful. I feel confident in what’s going on in my body, and I feel confident that I can convey that to doctors now. I gained SO much strength through the process. Really invaluable. Still, Covid got so bad in my state, that my hospital was actually telling me not to come in whatsoever. I was so sick in December and needed to be hospitalized but they were all full. THAT’S LITERALLY SO SCARY! It’s not only just for Covid…. things like car accidents, heart attacks, kidney stones, etc. It’s beyond concerning knowing that you were hospitalized every month and now you have to try to make it 3 or 4 months without one. Thankfully, we have plans in place, but it is still a worry.
There have been some other challenges that Covid brought on, one being the end to physical therapy (PT). This one was hard. I was just a month into PT and it was an escape and release for me. It was such a loss when we had to stop due to lockdown. I know a lot of my chronic illness friends feel the same. It’s a huge loss to not have physical therapy or physio in your life and for your body. The last one I will cover is one I got from a dear friend who is a fellow chronic illness warrior and she said, “It has made me feel more vulnerable and fragile. We can’t just take risks like others can”. People who are chronically ill have watched others live out their lives while we fight for ours for a while, but it’s just exasperated now that Covid is going on. It almost seems even more unfair. Most of us in the chronic illness world are either completely freaked out about getting Covid due to our comorbidities or have had it and had terrible experiences. We don’t have the option to just be carefree and hope our case of Covid isn’t bad. We hear horror stories of people just like us or even those not chronically sick at all, and all the worries flood our brain. Are we going to make it? Are we going to get through this? If I get Covid, will I die? Will I end up on a ventilator? Will I pass it on to my loved ones? There’s so many unanswered questions and hard truths that lie ahead.
Sometime in the near future, Covid will be contained. Life will get back to normal, people will go back to their old lives. But for those with chronic illness….once again, nothing will change for us. Well, except for now we get to go back to watching others out living their life while we can’t get out of bed most days. And someday in the future, if you know someone with a chronic illness….maybe give them a little extra grace. Especially since now you’ve had a peek into part of what their lives look like.
If I could offer you a couple tips for living with a chronic illness during this pandemic, they would be this:
- Find a solid support unit, whether that’s your family and friends, or on Instagram or Facebook. Connect with others. FaceTime, text, audio message, write letters. Keep up with people. A large amount of my day is just spent messaging and talking to all my friends and family. I would strongly recommend this!
- Find lots of activities to do at home. Get into a form of art, or do activity books. Find some good reads or podcasts. Since we are stuck in these 4 walls right now, we have to find different forms of entertainment to get through our days. Find a new hobby, it will be worthwhile!
- If you start to get sad seeing others out on social media, take a break from it. For the chronically ill, we are used to watching others, but like I said above… now it just seems even more unfair. So I strongly suggest taking a break if you are feeling like it is effecting your mood. I have taken multiple Covid social media breaks… don‘t put pressure on yourself for how long. Just start with, “ I’m going to delete my apps for today. Just today.” Then the next day you can say it again or try your apps again. Be fluid! There doesn‘t need to be set rules and guidelines.
- Say YES if someone wants to drop a treat, meal, or gift off for you. I recently started saying yes to more people if they wanted to treat me to something. (Left on doorstep, obviously). We aren’t able to go out and enjoy our favorite foods/drinks right now, so if you are craving something or someone reaches out to bring something, say yes. It will surprisingly make your day. The fact that people think of me and want to help improve my day means the world. Every treat/gift brings the biggest smile to my face!
- Be kind to yourself. Times are hard right now. Even harder than normal for us spoonies. Remember to be gentle with your body and mind. We are fighting some tough battles and under a lot of stress. Talk gently to yourself. Find things you love. Seek out people who make you happy. Focus on the small. One step at a time. We will get through this!
**Originally published on Hear Her Speak https://www.hearherspeak.com/health/how-covid-has-changed-life-for-the-chronically-ill