Being Chronically Ill During a Pandemic: Part 2

I've previously spoken about the mental challenges of having AS and being immunosuppressed during the pandemic. Unfortunately, that was just the tip of the ice berg. Here are some more (of the many) aspects of my life that have been affected over this time as a person living with chronic illnesses.

Missed appointments

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.

Vaccine efficacy

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 jabbed.

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.

Conclusion

Unfortunately, there doesn’t seem to be an end date in sight for this virus; it’s showing no sign of politely scampering 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.