Covid-19 is still sending riptides through societies all over the world and the death toll just keeps rising. Most people are feeling a sense of confusion, anxiety, and panic in such a time as this and many also feel lost after having their usual quotidian routine interrupted. I don’t necessarily feel this way. And that’s because, if you aren’t familiar with my blog as of yet, I have lived with Crohn’s disease since I was 11 years old. The last 10 years have been rocky to say the least and I’ve never really managed to get control of my illness through conventional medications and treatments. Things really came to blows in the last two years; I had to drop out of university and ended up having a couple of major surgeries in October and December. Now, about 6 months on, I am finally feeling -dare I say it- good. Perhaps not “normal people” good, but my version of good. I was so excited to finally be able to do the things that I’ve been pining to do for so long that were robbed from me by my extreme and prolonged flare-ups and extended hospital stays.
So, imagine my disappointment when I’m finally well enough to take on the world and it shuts down. In one sense this paradox is strange: I was unwell, and the world carried on without me, and now I’m well and the world stops in its tracks. But in another sense, being deprived, lonely and shut away from society is nothing new to me. The lockdown may seem like some cruel dystopian experiment to some but in fact, it’s been the reality of the better part of my teenage and young adult life- sad though it sounds. And I am not alone in this. Thousands of people burdened with life-long illnesses and conditions have suffered all the same. Just the other day I was reading an article about Selma Blair who was diagnosed with multiple sclerosis in 2018. She explained on Miley Cyrus’ Instagram live show Bright Minded how she’d “pretty much been in isolation for two years” already because of her condition and that now “everyone’s on this same kind of daily trajectory [she’s] on”. I can definitely relate to this. In fact, if I’m honest, isolation now is a breeze with all the practise I’ve had and, like a lot of people who have endured illness for such long periods of time, the main thing that really matters to me is feeling okay and achieving that coveted idea of remission. I’ve barely reached this goal since my diagnosis in 2011, so now that I finally have, nothing else seems to matter. It’s amazing how the sole aspect of physical health becomes the pinnacle of happiness for chronic illness sufferers. If anything, despite the lockdown, I feel blessed just to be doing okay. It’s all about perspective.
It’s interesting to me how many times I’ve read online or in group chats that people are “missing out” on anything from concerts and festivals, to graduations and birthday parties. But from the perspective of someone who is chronically ill, there are two very different kinds of missing out. The first is when events are cancelled, and no one can enjoy them- such is the case with the pandemic. The second kind, the kind that anyone with a chronic illness is so painfully used to, is when events are still going on and we are the only ones missing out on them. In other words, rather than this now collective halt to activity and celebrations, the world keeps turning while we stand still. Now, I’m not implying that the lockdown and all its subsequent cancellations have not been painful, particularly for once in a life-time events like graduations or weddings. But I do want people who aren’t used to this way of life to realise that they are all in the same boat and that this lockdown doesn’t have to produce the same level of loneliness and exclusion as chronic illness sufferers frequently face when they’re stuck knowing that life happily continues in their absence. Now no one is behind or ahead. Now no one person can have more experiences than another. In a way it ironically almost draws a line in the sand, and, in terms of socialisation, it puts us spoonies on par with the rest of society- even if it’s just for a short time.
I do hope that one thing that comes out of this lockdown is a sense of compassion and understanding in healthy individuals for the daily reality of many chronic illness sufferers. Remember, one day your lockdown will lift, ours will remain for the rest of our lives. Your cancelled events will likely be rescheduled, we don’t have that luxury. Perhaps it would be prudent to consider this a temporary window into our world- that is, without the overarching burden of excruciating pain and the plethora of other physical and psychological symptoms that impact our quality of lives on a daily basis. I also feel that a lot of those who are struggling most are people who haven’t faced serious adversity or upheaval in their lives, and many are owning up to this. Writer Megan Murray wrote in Stylist magazine the following statement on April 16th: “This pandemic has made me realise I was naïve to think my life would go exactly to plan”. I admire her for coming to this realisation, and it is likely true for quite a few people. As for us spoonies, through circumstance we are accustomed to facing serious problems pretty regularly, to having our plans and hopes constantly obliterated, to being grateful for even the minutest of triumphs and to appreciating the small things in life. Eating a yummy meal, hearing birds outside my window and being able to have a lie-in without needing the loo are genuinely enough to put a smile on my face. I hope everyone now is forced to slow down from their hectic lives and really see and value everything that’s around them, because it’s the best way to stay sane. I also hope that people will feel less complacent and go with the flow a little more when their lives get back on track.
I’m aware I have not yet mentioned the illness aspect of this pandemic and the risk to everyone’s physical health. Although everyone is now “at risk”, people with long term illnesses or those on immuno-suppressants (including myself) are particularly vulnerable and have been instructed by the government to adhere to strict social distancing measures. Again, keeping a good amount of personal space is nothing new to people who are immuno-compromised. Whenever I hear someone has a cough or cold, I steer well clear as what may be a simple and temporary cold for them could knock me out for weeks or lead to something far more sinister. While most people appear to be respecting the social distancing guidelines, there will always be those few who put everyone at risk through their selfishness and ignorance. I even read an anonymous post on my university Facebook confessions page suggesting that our society is too overpopulated, and that this virus is the best way to essentially “kill off” the vulnerable. It’s so nice to see that our elderly and vulnerable citizens are respected. Unfortunately, ignorance is omnipresent surrounding chronic and invisible illnesses especially, and this person’s position of self-interest is what puts all of us at risk. We may be “vulnerable” physically, but mentally we are as strong as they come, and we can still be productive and useful members of society regardless of our age or health conditions. Just look at Captain Tom Moore who has raised more than £26 million for the NHS at the age of 99 by walking around his garden. I wonder what whoever posted that comment has done?
Having said all that, it may sound somewhat strange for me to say that I’m not particularly “anxious” about Covid-19. Of course, I am fully aware of how serious it would likely be for me if I contracted it, and I am always careful above and beyond what is recommended by the government. However, after everything I’ve been through, I’ve learnt not to resent what is out of my control. I will try my best to stay safe, as I hope everyone else will also, but at the same time, if I do indeed contract Covid-19 despite my efforts, then “it is what it is” as everyone says, and I will cross that bridge when I come to, as I have all the other bridges in my past! I live everyday not knowing how I’m going to feel or what awful problem I might wake up with, and Covid-19 is just one more to add to the list. I’m not downplaying its importance; I am just explaining how I am not feeling this sudden health anxiety like a tonne of bricks because I’ve lived with a form of it for a decade already.
One last thing I would like to mention is how I hope the “system” will adapt once the lockdown relaxes. As I stated above, I had to drop out of university because of my illness and throughout my high school-college experience I also had very low attendance. And what was I told? That it was all or nothing; that it was completely impossible for me to do any work from home and that I would have to give up my education because of my inability to be there physically. And then coronavirus happened. And then suddenly it became possible for students and employees to work remotely. I do understand that they were hardly going to change the entire system just for one person. But that’s just it. I’m not the only person who’s found myself in that situation due to illness, but provisions are rarely made for us. Now that pretty much everyone except key workers cannot go to work, school or university, change has to take place and institutions have to be more flexible. And perhaps once remote education/ work has been done once, then it can be done again for everyone like me in the future who is forced to give up their job or degree due to ill-health and who is set aside by society with their progress paused. Sometimes we are far too ill to work- as was my situation for most of last year- but at other times, we can power through our illness and be productive, just not in the conventional setting. I for one self-taught my GCSEs and a large portion of my A levels after being told by one teacher that she could “only be responsible for students that were IN her classroom.” Well I happily overturned the offensively low predicted grades they had for me and self-taught my way to one of the best sets of marks in our school. And the best part was that they couldn’t take any credit. Hopefully now it won’t be too much to ask to occasionally work from home when people are really suffering, and society will better accommodate people with long-term health issues and value what they can achieve even if it’s not conventional.
To close, I wish everyone well through this pandemic and offer my condolences to all the grieving families out there who have lost loved ones to Covid-19. And I implore everyone, the government and citizens alike, to try their best to embrace this period of lockdown. Keep busy if you feel like it or relax if you don’t, appreciate the little things around you and stay connected. Once this has settled down a bit (I don’t think its responsible or realistic to say “once this is over”, given that it may become a persistent virus like the flu), people will realise how lucky they were before to live freely and they will cherish the opportunities and the people that are in their lives all the more. And hopefully, they will also have a new understanding and respect for those of us who didn’t have the luxury of complete freedom in the first place.
Stay safe x
P.S. If you’re suffering from Crohn’s or Colitis, CCUK have partnered with the British Society of Gastroenterology (BSG) to create a web tool which will tell you your level of risk of serious complications from contracting Covid-19 based on your current state of health, medications, treatments, surgeries etc. The tool can be found here: https://ibdregistry.org.uk/covid-19/ .
Me and My Crohn's 