Chronic Illness Life: I'm spending my birthday in lockdown, just as I do every year

Talking about life as a disabled person in a COVID-19 world has been difficult and there have been splatterings of it in my monthly updates, and more on my Twitter feed. However, putting something more formal down on paper has been harder. Trying to coax out words that would actually be informative and not just a bitter rant has been near impossible at times. And then as my 36th grew closer a topic presented itself; spending my birthday in lockdown, just as I do every year.

As we ride the second way of the pandemic people are wondering again how to celebrate birthdays and other events now that restrictions are back in place, and while I have sympathy for them it’s tinged with the same frustration I’ve felt throughout this year. You see, I’ll be spending my in lockdown, just as I do every year. It’s a little different as it’s a lockdown imposed by my body, my health conditions, but it’s still a lockdown. I don’t go out, I don’t have a party, there’s no drinks or a meal. Sometimes there’s a plan for a meal but I always know deep down that it’ll never happen. I’m never well enough. We have cake, presents and cards are exchanged and that’s it, my birthday is over for another year. It’s begun to just feel like another day, save for that extra reminder that another year has passed and I’ve failed to do all those things that “normal” healthy people do.

While I use examples like this to compare my situation in hopes that people may begin to understand the situation many disabled people live in now and before the pandemic, I constantly fail to gain any ground. In general, people are short-sighted, seeing the lockdown as a temporary measure that they only need to survive for a certain time. It’s even worse now that the lockdown has been eased once before. The divide between us (healthy people) and them (disabled people) has grown even bigger. The pandemic is a reminder that they can get sick, that they can be weak and the restrictions of lockdowns and wearing masks to protect more vulnerable people are leading to more and more protests. It doesn’t seem to matter that out of the 500 cardiac-related deaths in the UK each year 1 in 20 of those is labelled as ‘sudden arrhythmic death syndrome’ (SADS) suggesting an underlying heart condition that the person never even knew they had. That’s just one terrifying example of an invisible health condition people can be walking around with.

As I write this UK students are trending on twitter as they complain about being in lockdown for a few weeks on campus, having paid 9k/14k in tuition and accommodation only to be confined to their dorms for their own safety. (and the safety of others). While I have sympathy for their mental health, I feel it’s necessary to point out that this isn’t their primary concern; money is. They only reach for ‘what about our mental health’ when confronted with the reality their disabled peers have had to live with for years. This is what happened when I pointed out to one of them that when disabled students were ill and unable to leave their dorm rooms they weren’t given the luxury of online classes. They just missed them.  I was given platitudes in return; “that’s awful for disabled students”. When I counter-argued I was then accused of making it a and told: “we’re fighting the same thing, we should be working together”.

That’s the problem. We’re not fighting the same thing. While I wish that there was no them vs. us in this scenario, the problem is that there is and it wasn’t the disabled community that drew that line in the sand first. Comparing a few weeks in lockdown to someone who has spent years housebound is pure privileged healthy person ignorance. The girl I was arguing with kept repeating how awful it was for disabled students but kept returning to herself and that has been the recurring thing this entire year; selfishness. Healthy people have literally been handed remote access on a platter, something the disabled community have been championing for years but were constantly informed it was ‘impossible to implement’ and still they complain.

For most people, the lockdown and the pandemic is just a temporary inconvenience, a storm they just need to weather through. For those of us who are disabled and/or chronically ill, we don’t get to just wake up one day and say ‘thank goodness it’s all over’ because there is no end. We’re in this for life.

Over to you

I’d like to make the point that this isn’t a pity post; it’s an awareness post. Maybe one day I won’t have to spend my in lockdown, but there won’t be many of them and that’s ok. I’m alive, I’m happy and I do what I love. Some days suck more than others, but there are a lot worse things and for that I am grateful.

Disclaimer: While I refer to the disability community multiple times throughout this post I do not speak for everyone in it. I am, however, echoing the thoughts and frustrations of many people within the community that I’ve seen in other blogs and posts. If you want to know more about what the lockdown is like from our perspective then I urge you to seek out people from the disabled community. Read their own words, not the narrative that the media puts out there. If you would like some examples just let me know in the comments and I’ll be happy to share some  <3

Chronic Illness Life: I'm spending my birthday in lockdown, just as I do every year: As I near my birthday I prepare to spend my birthday in lockdown like many others but as a disabled person I'm not like everyone else; I do this every year.

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