Your New is My Normal"

By Heather (she/her), Racheal (she/her), and Jack (he/him).

We have grown up hearing the importance of “walking a mile in someone else's shoes” in regards to empathy. Whilst not even realising it, as a society we have been wearing the shoes of people with chronic illnesses and disabilities for the past couple of months now in many respects. It is really important we engage with this, the idea that the experiences of not being able to leave the house, social distancing, and a difficult disrupted social life are not new experiences for everyone. For some people they have been, are, and will continue to be their normal. In this piece Heather, Rachael, and Jack talk about their experiences of having aspects their normal go from a minority experience, into the mainstream, and the prospect of it reverting back to the minority experience.

Heather, 27

I’m sure I’m not the only one who keeps hearing the phrase “new normal” to describe the current lockdown. People use it to refer to the drastic impact that being isolated has had on their work life, social life or daily routine. This impact is not new for those of us who suffer from chronic illness.

We’ve already faced days or weeks staring at the four walls, unable to see anyone outside our households. We’ve already tackled the challenges of education or work, whilst being unable to use public transport or leave the house. Many of us have had to research the complicated UK benefits system, to discover our entitlement, before fighting that same system to make ends meet.

I was stuck at home for 7 months before the lockdown due to illness, unable to see anyone who had symptoms of a virus or infection. Days were spent in hospitals, and weeks staring at my bedroom ceiling. I had to adapt to my new routine and limitations, grappling the emotional fallout of being unable to do normal things.

This sounds very similar to what everyone is facing now and might make it seem like this could be the new equaliser. Maybe everyone being stuck at home, unable to attend social events, will appreciate how hard it is for disabled people on a daily basis. I’m not convinced, because there is one key difference. Lockdown is temporary.

Every day friends or family talk about what they will do “when this is over”. People are already planning events, holidays and activities for “after”. Isolation is only their “new normal”, for now.

For those of us with chronic illnesses, isolation and absence can sometimes be temporary (in the case of a bad flare up), but the disease is permanent. I don’t know when I will go back to work, or what it will look like when I do.

What I do know is that my illness will never be cured. I will always be aware of that “second wave” that can hit at any moment. My body will always have limitations. I will again have to spend days or weeks staring at the four walls, cancelling social events and tackling the benefits system.

Lockdown is not my “new normal”, but for me this is permanent.

Rachael, 19

In this time of uncertainty, words like ‘disease’, ‘self-isolation’ and ‘social-distancing’ have become synonymous with daily life, as we continue to face COVID-19. For many, wherein reality appears surreal, navigating the new ‘normal’ seems impossible; and in the case of countries that have gone into lockdown, excessive. However, for many people, this is their ‘normal’. No, I’m not referring to the memes online that talk about introvert’s lives being akin to quarantine. I’m talking about those who had to social distance even before it became relatable. That’s right! People with chronic diseases or illnesses.

Self-isolation is tough, but you know what’s tougher? Having a disease. When I was diagnosed with a blood cancer called Hodgkin’s Lymphoma at the age of eighteen, I thought my life was over. In hindsight, what was definitely an overreaction at the time, turned out to be ironically literal. Not in sense that I was terminal or anything; I wasn’t, I was a promising stage 2. It was the fact that life as I knew it, would not be the same. I was in the second semester of my first year at university, settling into the new ‘normal’ that was university life. Nothing could have prepared me for the next 8 months. That involved six months of ABVD (an acronym for my ‘cocktail’ of drugs – don’t worry, I still can’t remember what they all stand for) every two weeks. During my treatment I social-distanced and self-isolated. My doctor didn’t call it that, but that’s essentially what it was. I was to avoid large groups of people; that meant cinemas, concerts, parties, things like that. The idea of isolation in this sense was two-fold: in the week after treatment, I usually couldn’t physically get out the house because going down the stairs was exhausting enough, and then there was the isolation from normal life, my friends, doing ‘teenager things’. My point is, I’ve done this before. It’s hard, but there are ways to make it more bearable.

First of all, to paraphrase the incredibly philosophic film High School Musical, we’re all in this together. This time, we’re all in isolation, some more so than others, granted, but this time FOMO is unjustified; we’re all missing out. Despite this, something that helped me was deleting Instagram, and only using social media with a messenger application. For me, at first, isolation felt like a prison, and that I was the only one doing the time. I came to accept it, and instead of fighting something I couldn’t control, eventually isolation served as a time for reflection, and to prioritise getting better. I had no choice but to pay attention to how I was feeling, and sometimes that can be a bit overwhelming if you struggle with mental health. Suddenly, you don’t have any distractions. This is a good thing, but it can become toxic if you don’t find a balance. The way I dealt with this was talking to my friends, quite often over text, call or videocall; our main source of communication during this time. Something that is also important to realise, is that just because you can, doesn’t mean you should call people all the time. In isolation, I find myself talking to my friends more than I usually would, and that’s great, but you also need to take time for yourself.

After a week in a constant chemo-induced slumber, I would always look forward to getting out for a walk. Sitting on a park bench, and simply watching ducks swim across the water, ripples refracting in the dazzling light of the sun. I had never felt more alive, released temporarily from my prison to enjoy the sensory overload that nature became, in contrast with my current situation; I felt only gratitude. It sounds cliché, but the simplicities of life are often the richest. Moments of happiness in spite of pain. During this time, creating discourse surrounding whatever losses or difficulties we may experience is much more useful than being dismissive.

However, it is vital that we all acknowledge not only our pain, but our happiness; something I hope we can all learn to do in isolation

Jack, 18.

Isolation. The past couple of weeks for the world I guess. Honestly, it’s not fun, it’s boring and for most people it’s new. Everyone will have had a type of isolation in their life: whether that be school mandated or self-inflicted, everyone is forced to be on their own sometimes. For most people however these are pretty rare, one off occasions, but because of my health they happen all too regularly. My frequent isolations can be described as, to be blunt, monotonous, repetitive, boring, repetitive… okay I will stop with the jokes. I’ve had a lot of stints in hospital and time off, and I couldn’t see anyone and they couldn’t see me which genuinely sucks.

During these periods of distancing and isolation I’ve had to work out how to make it more manageable, and have come up with a few things to keep me going. The first is contact. As much face to face contact as possible, whether this be over Skype, Snapchat, or Messenger, it is always nicer to see someone's face than text, because you can feel more connected and it feels much more like a real conversation because you can get that back and forth flow.

The next would be to take up a new skill that requires focus, repetition and a good couple of days to begin to master. I started doing a new card trick (I did/do magic for fun). The same trick for hours with a camera in front of me telling me if I messed up on a re watch. This worked really well for being able to do it by myself, on those long boring days in hospital or off ill, and this made me focus, like, really focus. If I didn’t put my mind to it, I would start wondering what my friends were doing or something akin to that. So, for three days I made this trick perfect. To the point it became second nature. I can still do that same trick now three years on. It’s not the thing you pick up but the amount of focus you put in, the more the better.

And my final tip: make everyday productive. By productive I don't mean doing super big things, just simple things that don't take too long but at the end of the day you can feel like you've done it. What “productive” means can change so much depending on context, when I was on the ward I used to set myself goals, walk to one banister, push one metre then walk one metre then have a rest. Now it’s like maybe tidy a room, or do a piece of work. For me I don't find it works just non stop Brooklyn 99 on repeat… not mentioning names. Instead making lists with tasks and goals for the day, and then being able to focus everything onto that to be able to distract from everything else and give structure to my days is what works for me.

Some things to remember: everyone is in the same boat, and chances are they are feeling the same so you are not alone in it. It can help to find your rhythm, for me that is making lists and focusing on the tasks on them, but you have to work out your rhythm.

….

So, take some time to reflect on the fact that you are currently living aspects of the “normal” for so many chronically ill and disabled people. Even more importantly, think about how you are going to allow the experiences of wearing these shoes can be translated into empathy long term, because when lockdown is over and you can kick these shoes off and start on your lengthy “when lockdown is over” list; being able to leave your house, hug your friends, and socialise whenever you want, that “old normal” won’t be reinstated for all of us.

Stay safe, stay home, and look after yourself and those around you,

(Originally published 10/05/21)