An interview with Emma Illingworth (she/her), written up by Ross Tanner (he/they)
There is no question of why lockdown is difficult. It’s tough being isolated from friends, families and the outside world. Events, celebrations and other markers in our lives that give us structure and purpose have been disturbed or cancelled. Often the isolation, the empty days, and the spare hours leave us with our own company and thoughts scrolling through TikTok, Instagram and YouTube consuming influencers unrealistic expectations of spending your day doing ab work outs, creating artistic masterpieces and saving the planet. This combined with the general reason of why we’re in lockdown can leave us with guilt, moments of sadness, loneliness and worthlessness. However, these feelings have never been felt more for someone living with a disability.
Earlier this month I sent the lovely Emma, who has Crohns and a long-term eating disorder, a few questions about how she was lockdown and what the whiplash of lockdown was having on her. You may recognise Emma as one of our amazing contributors, who’s written a few insightful, interesting and important blog posts and this is no exception.
How are you? Where are you isolating? Who are you isolating with?
I am okay at the moment, been up and down as per usual! I am currently isolating in the centre of Leeds with my boyfriend. When lockdown began my parents were still going to work and it was more dangerous for me to be at home.
- How are you coping physically? How are you coping mentally?
Physically I have been very up and down. The fatigue side of things is brutal, my sleep routine is fairly disrupted and the inability to go outside a lot means that I find it hard to be motivated to move. I suffer with a lot of joint pain and issues (a side effect of Crohn's Disease as well as suspected arthritis) which means that sitting around makes my joints flare causing a knock-on effect on not being able to exercise.
Mentally things are harder; with having a long-term eating disorder not being able to be active means that I struggle with the guilt of eating because I get scared it will simply make me gain weight. This can lead to restriction and then in turn the binge-purge cycle of bulimia.
I also cannot work, most of all because I teach children so there is no way I could be close to them but also because my line of work (specialising in younger children) means I cannot do much online. This makes me feel like a let-down and certainly makes me worry about money.
The lack of routine, daylight and fresh air does feed my depression and it is hard to get out of the cycle of waking up late, not getting dressed and feeling tired.
- Have you been feeling lonely? Do you think you cope better than able bodied people because of living with a chronic illness can be isolating?
As I am staying with my boyfriend, I am not struggling with feeling alone as such. I miss my family and particularly my grandparents, they have all been very unwell and in and out of hospital and not being able to support them upsets me.
I do certainly think that living with a chronic illness prepares you for isolation situations, I have spent a large portion of my life being at home alone and poorly and so I think it is easier for me to accept. My boyfriend also suffers with a long-term chronic illness and he has mentioned that the isolation he faced in the 7 years his colitis was at its peak makes it easier to deal with the current situation.
- Have you been asked to shield for 12 weeks? How does this make you feel and what does it feel to be classed as high risk atm?
I have been asked to shield for 12 weeks seen as though I am on immuno-suppressants and am at a higher risk than others; this does make me feel a bit disappointed because it makes the simple tasks that others can do at the moment (go to the shops) a lot more stress because I am constantly on edge about coming into contact with other people. I am anxious anyway over my health condition and my susceptibility to getting viruses and infections and during this pandemic, that threat is only heightened.
-what's the protocol when/if you need to go to hospital?
I am required to go to hospital at least once every 8 weeks for my infusion; when I enter the hospital there is a hand-sanitising station, social distancing measures are taken, and PPE is worn by staff. Where I attend there are normally around 10 other people having their infusions.. We weren't placed apart by 2 metres and the staff were not wearing PPE in my clinic room other than gloves. This caused concern for me as the drug I have is, as mentioned, an immuno-suppressant. This caused me great anxiety and concern over being infected by a health-care worker; they are exposed to more people than anyone else I may come into contact with and has made me question whether I even want to go and have my infusion again.
- Do you think the government is doing enough? This doesn't have to be political, the inspiration for this question was that the chief executive for Disability Rights UK said that people with long-term conditions are being treated as "inevitable cannon fodder in the face of COVID-19".
I think this is a difficult one, politics aside I think whoever was running the country during this pandemic wouldn't be able to do enough to contain it because it is simply out of anyone's depths. However, I think it is diabolical that there is a lack of PPE for people and I think the lack of care for those with chronic illnesses is really showing. The government have a database which I am on and I have had nothing that was promised to help the vulnerable. It is hard to get shopping deliveries, I have to travel for medication, access to a doctor is almost impossible. Being vulnerable should mean being a higher priority in these cases because it is too dangerous for us to go to the supermarket etc.
That being said, I do think that the government are trying their best under the circumstances and I would hate to be in the position they are in now. If anything, this pandemic has highlighted our dire need for real infrastructure and disaster-plans.
I also think that a lot of deaths and infections could have been prevented if lockdown had been brought into fruition faster and there was more enforcement over social distancing, one trip outside per day and places being closed. There isn't enough money for people though, so I do understand the outcry that businesses have over being closed. I am making no money and there isn't support for the self-employed truly, there is Universal Credit but the application time is too long to help the people who need it NOW. I wouldn't be surprised if this demolished the rise of independent companies.
- Do you think that this pandemic has highlighted wider ableism in society, and why aren't people with long-term conditions central to the government’s plan? 98% of the population are relatively considered safe but 2% are considered vulnerable so the wider public are more complacent with the virus spreading and harming high risk people?
Certainly, there is a definite sense of selfishness at the moment with people feeling hard-done-by because they cannot work or go for a drink with friends. People keep asking why they can’t go to a friend's house but that will just cause a domino effect. The majority of people don't have the weight of being vulnerable, chronically unwell, mentally unwell and immuno-suppressed on their shoulders so cannot understand why measures have to be strictly put in place. This position we are in is crap, it is the worst, but it is here to protect our vulnerable for as long as possible. There is a definite lack of respect for the vulnerable. I read someone online say that this was purely natural selection and a way to get rid of the vulnerable people and keep those in the country that actually have something to offer; being chronically ill certainly doesn't correlate with worth and it makes me so mad to think that people dismiss the vulnerable so easily as being a waste of time, money and resources.
- And finally, what is one thing you can't wait to do once this is over?
See my family! I miss them. So many people want to go for a drink, a fancy meal, go to the gym etc but I think this should really highlight the need for appreciating those around you and not taking for granted the people we have in our life. Life is precious and this pandemic has proved it is so easy to lose. I just want to see the people I love.
Thank you so much to Emma. If you enjoyed this and want to find out more about Emma’s life living with Crohns, her wonderful poetry and beautiful photography you can find her on Instagram with the username @quitesimplyemma.
(Originally published 18/05/20)