When lockdown started, I discussed with a fellow chronically ill BFF, as well as a stranger I connected with through the PenPowerment project, how this time has really echoed the times when we’ve been incredibly unwell. It’s also highlighted how many able-bodied people have no idea that this is how chronically ill people live for much of their lives – on one hand it’s baffling how ignorant people can be, but on the other hand, how can they know if they can’t see it?
Some of you will know my story, and some of you won’t, so I’ll give you a general overview alongside what I learnt.
During my second year of uni, I became extremely exhausted, very anxious, depressed and confused. I could barely get out of bed, let alone leave the house to go to uni. I spent my days resting, but never felt rested. My body felt like lead, I couldn’t remember basic tasks like brushing my teeth and eating breakfast, as well as so many other symptoms.
I left uni and moved back in with my mum, because I couldn’t look after myself. I didn’t socialise a lot because it was exhausting to catch a bus from my village to see friends, and many of them were still at uni. Not to mention the soul-crushing shame of having something wrong with you.
This is the part which in hindsight has prepared me for lockdown – I’ve lived it before.
Just like this situation, it wasn’t my choice to stay at home. It felt like my freedom was taken away from me by illness. It felt so sudden and unexpected, and it was completely out of my control. There was nothing I could do at this point, but stay home and hope things got better.
Most of my social life became conducted online instead. I learnt how to stay in contact with friends, and tried to make the best of it. I’d send special letters, chat all day with friends who could be available, and call people in the night. I wanted to feel connected, even though I felt so far away from everything. I already felt like I was being left behind, and staying in contact with my friends made me feel like I was still part of the world.
Plans had to be changed or cancelled. Spontaneity fell away. Sometimes I’d get halfway out to see a friend, and have to turn back because I felt so unwell. I couldn’t make it to events that I’d been really looking forward to. I couldn’t just do whatever I wanted to anymore.
The future became uncertain, and I stopped making plans. It’s hard to think about a future when you don’t know if or when you’ll be able to do anything. You can’t make any set plans, because you don’t know if you’ll be well enough to fulfil them. Now, we can’t make plans because we don’t know when it will be safe for us.
I felt tired, sad, angry, frustrated… I was grieving my previous life. A lot of what we’re all feeling right now is grief. It’s traumatic. It takes huge mental toll to lose what we had before. It’s hard to believe, and really difficult to come to terms with.
My home became my sanctuary – I spent pretty much every hour of every day in my bedroom. It had everything I needed, and it was safe. I filled my space with things that made me happy to look at, as well as books, films, manageable activities to keep my mind occupied.
I developed coping mechanisms for being indoors, filling time. Not all of these are necessarily healthy ones (hello, snacks and disassociation), but they would get me through a small period of time and make me feel something or nothing, or distract me from the bad feelings. My biggest and best coping mechanism is accepting the situation, however it’s also a hard one to grasp.
I learnt to settle for less and embrace a smaller, slower life. Accepting the situation and what you have is incredibly hard when you feel like you’ve had your life taken away from you. Making the best of it is so much easier said than done. But if you’re able to appreciate what you do have – instead of yearning for what you don’t – it can make things a little easier.
For many of us, having things to look forward to is important for good mental health, so perhaps we just need to learn to look forward to the small, certain things, or look forward to the bigger things without attaching a date to them.
After a few months to a year (just like now, the timeframe is fuzzy in my head) I was diagnosed with an illness that could be treated with medication (hypothyroidism), and gradually got better from that point, but it was a very odd feeling to be in such a similar state in March this year. A strange and painful nostalgia. That time reminds me of a lot of feelings that I don’t really like to remember, as I touched on in one of my last blog posts – 2020 and why I’m not looking back.
As always, I’m not writing this to be all woe-is-me – I am incredibly lucky to have had the chance to get better! But this is the reality for chronically ill people day in day out, even without a national lockdown. There are vulnerable people in your neighbourhood, in your community, and maybe in your family, and we need to be more aware of that.
It is so hard for us all to be doing this and incredibly heartbreaking to be away from our loved ones, but for most of us, this is just temporary. Please think about the privilege you have, and how you can help end this sooner, simply by staying home.
