Being Chronically Ill During A Pandemic
I'm not surprising anyone by saying that the COVID-19 pandemic has had an adverse effect on peoples' lives. However, I believe those of us with chronic illnesses have been disproportionately affected during this time.
Being on immunosuppressants to prevent my body from attacking itself means that I am extremely vulnerable to any kind of illness. Even the common cold is a 2 week ordeal for me so I dread to think how badly COVID would affect me.
Not only that, but I am terrified of the thought of having to pause medication that has helped me control this condition in order to give my body any chance of beating the virus.
I have been extremely lucky to have made it this far without contracting the virus, but that hasn’t stopped other aspects of the pandemic turning my life upside down.
Of course everybody has had a completely different experience during the last two years, but this has been mine.
Not going out
In March 2020, I received a letter from the UK government instructing me to stay inside and away from the public for 12 weeks because of my underlying conditions. I remember thinking what an outrageously long amount of time this was going to be without seeing anyone. Now I have to look back and laugh at how naïve I was for thinking it would be over that quickly.
This meant zero human contact. No socially distanced walks in the park with friends, no hugs from my mum, no company on birthdays or holidays. Nothing. I had to make do with my own company within the same 4 walls and try to not go as insane as my ever growing hair and beard made me look.
I live in an apartment that opens up onto a shared garden, but I was too nervous to even brave it outside that far.
Every few weeks I would receive a new letter with a later release date from the house arrest that I was on. It wasn’t until I received my second jab a year and a half later that I was finally allowed to reunite myself with fresh air and humans beings again.
The only positive to take from this is that I have probably saved a lot of money on trips to the pub or traveling. However, in reality, I have probably spent most of that on my heating and electricity bills keeping me warm and entertained throughout this time!
Living in fear
All of this time on my own without human contact was extremely challenging and I had to put the majority of my energy into keeping myself sane.
How I did this was by basically convincing myself that going outside would essentially mean instant death to me. It sounds very dramatic but it was the only way for me to feel as though I was doing the right thing.
The first human contact that I received other than seeing delivery drivers dropping off my groceries outside my apartment was when I went to receive my vaccinations. Even that felt nerve-racking. Sitting that close to a human again was so alien to me after being isolated for so long.
I clearly did a great job at convincing myself how dangerous it was outside, as three jabs later, I am still finding it hard to shake this feeling. Frankly, I am still traumatized from all the time I spent hiding inside and scared to death of catching the virus and getting seriously ill. The outside world still gives me terrible anxiety as does the thought of being in close proximity to strangers without a face mask.
I was always told that absence makes the heart grow fonder, but in my experience it has just lead to me and my loved ones drifting apart.
During lockdown keeping in touch with my friends was easy. Nobody was allowed out so we were all in the same boat, and cyber meet ups on Zoom were happening regularly. But when restrictions ended for them but not for me, the cyber meets stopped and they would meet up in person again without me.
I can’t blame them; they were suffering too and were eager to get out again. In an alternate universe where I had a functioning immune system, I’m sure I would have done the same. But I couldn’t help but feel left behind and even more alone.
My friends are in their 20s and most don’t fear COVID as they are lucky enough not to have any underlying health problems and don’t see it as much of a risk. Some don’t understand why I’m still not comfortable joining them in public settings.
It is especially hard during the winter period. Even though the cold is not ideal for my condition, I only really feel comfortable being around others in an outside setting where the risk of contracting the virus is significantly lower. Sitting in the freezing cold is not an appealing suggestion to many, so at the moment I find my opportunities to socialize are very scarce.
Hospitals are of course a lot scarier to visit at the moment, but that isn’t the main issue. Understandably, the healthcare system is busier than ever before, but this has led to a huge number of appointments and treatments being cancelled or postponed.
I’m lucky enough to be able to administer all my medications at home but I have spoken to others who have suffered greatly from not being able to go into hospital for their infusions.
I was due to see my rheumatologist for a check up in March 2020. This was continuously postponed until I was finally able to attend an appointment in September 2021. This meant that I had been waiting 2 years since my last face to face check up.
With AS being a condition that requires a lot of movement to keep under control, I was pretty concerned that being stuck inside for so long may have had an adverse effect. I was weirdly looking forward to finding out what my rheumy had to say about it.
If you’ve read my article An Appointment of Disappointment you’ll know what a disaster this turned out to be, and I left the hospital with all of my questions unanswered, and no real knowledge of how my condition may have progressed.
So not only is there a fear of catching a new disease, but there is a risk of our existing conditions getting worse now healthcare is not so easily accessible.
One thing that kept me sane through my original period of shielding from society was the hope that one day a vaccine would become available and wake me up from this nightmare. When that day finally arrived and I received a phone call to book my vaccination appointment, I was told a few things that concerned me.
Firstly, I was told to refrain from taking any of my medications for two weeks before and another two weeks after the vaccine in order to increase the likelihood of my body accepting the dose.
This was worrying for two reasons. Firstly, I wasn’t sure if my body could cope for that long without taking the medications that were helping my body function. Secondly, if there are concerns about my body being able to accept the jab – am I going to be protected at all?
What was even stranger was that that when it came to my second jab, I was told to only take a week off my meds before and after the vaccination. Other people in the same situation as myself have told me that they were given different instructions. Some were told to take longer or shorter breaks from their medication and some were advised to simply carry on as usual. The varying information does make me worry whether anyone really knows how protected we are from the virus even if we are vaccinated.
Being forgotten about
I can’t speak about the situation in other countries, but certainly in the UK it seems as if those of us with chronic conditions have become forgotten about by the government and wider public alike.
At the beginning it seemed as though things were being taken care of. As "clinically extremely vulnerable people," we were told to stay inside for our own protection. This was a massive challenge but one that I was willing to take on for my own safety.
All I could do was sit indoors and patiently await further instructions. I would eagerly tune into every government update hoping they would address the situation, but it was constantly ignored.
I felt completely lost and confused and still do. Then one day we were told we were allowed to go outside again but warned that it was still dangerous for us. There has been no other advice about how to transition back into society at all.
Even the rules in place that made me feel any kind of security like enforcing mask wearing and social distancing in enclosed places have been since scrapped.
The number of cases is still extraordinarily high as is the fear that has been instilled in me over all this time. It is as if they expect me to carry on as if nothing ever happened or is still happening, but I simply don’t know how to with all this mental baggage.
Unfortunately, there doesn’t seem to be an end date in sight for this virus; it’s showing no sign of politely scarpering from our lives. I hope that things for me will one day return to "normal" whatever that may be, but it is hard to imagine that happening any time soon.
I usually try to make my articles as positive as possible, but it is difficult to find a positive spin on something that has had such a profoundly negative impact on every aspect of my life.
I like to think that all of this has made me stronger and more resilient. But what good is that if I am unable to receive adequate treatment for my condition or feel comfortable enough to go outside and live life again.
How has living with a chronic illness during the pandemic affected you? Let me know in the comments.
How much about your AS do you share with others?