Interview with Jenny McGibbon from This Thing They Call Recovery.

Jenny McGibbon is a freelance graphic designer from Scotland. She created a chronic illness platform, This Thing They Call Recovery to reach others within the community. Jenny offers realism, support, humour and comfort to the thousands of people all over the globe suffering with a chronic condition. Here we talked about everything from managing her conditions, to representation of disabled bodies, relationships and chronic illness; lockdown and her charity work.

Can you talk me through your experience with Gastroschisis? And what it’s like to live with Short Bowel Syndrome, Chronic Internal Bleeding, and Iron Deficiency Anaemia. 

I was born with the birth defect Gastroschisis. This is where your abdomen doesn’t form properly. I was born with a hole in my abdomen and lot of my organs on the outside. I had several major surgeries as a newborn to remove dead and dying sections of both intestines and reorganise my organs. This means a lot of them aren’t in the correct place – I have to be careful of appendicitis because I have no idea where mine is! 

I live with Short Bowel Syndrome as well and means I struggle to absorb nutrients from food and oral medications at times. I had the odd hospital stay with complications as a child – the smell of the children’s ward is strongly ingrained in my brain, but generally speaking I had a fairly normal childhood until the age of 16. This is when I developed Chronic Internal Bleeding from complications of the previous surgeries. This went on for several years, baffling doctors and being passed from specialist to specialist. I was tested for everything under the sun, from Crohn’s Disease to cancer and even HIV. I was in hospital weekly, whether that be for tests, consultations, or stays on the ward. It was a really difficult time for me and my family and thinking back, I don’t remember a lot of it now. I was regularly passing blood and my iron levels were almost non-existent. I had several blood transfusions and iron infusions, and at the age of 18 was scarily close to a related heart attack. Thankfully these issues seem to have settled themselves since the time of my ME diagnosis, but it’s still something I’ll always have to be aware of.

Tell me about your experience with ME?

I ended up with ME at the age of 19 and I can pinpoint the exact moment it happened. 

I was on holiday abroad with my family and had a substantial bleed. I went to tell my Mum and told her my legs had started hurting after it – first time I’d noticed something like that. Little did I know that 6 years later, they would still hurt. ME is a neuro-immune condition and it isn’t uncommon for someone to develop it after a viral onset. I don’t remember having a virus, but I think in this instance my body had so much to deal with and it snapped. 

It’s not burnout, nor is it a psychological disorder – as it’s often put down to. ME, sometimes referred to as Chronic Fatigue Syndrome, is a chronic and complex multi-system disease. It affects everything from my energy levels, cognitive abilities and mobility. It impacts my immune and endocrine systems, muscles and so much more. It’s a real bugger, and sufferers absolutely do not receive the respect and care they deserve.

Why is representation in the fashion industry so important to you? 

I studied fashion branding at university and have always had an interest in the industry, particularly the visual side of campaigns. It’s an industry that could really push for representation if they wanted to, but sadly it’s definitely lacking. 

The world is full of such a diverse range of people, and everyone deserves to see themselves represented somewhere. I was bullied for a decade at school because of my scar and lack of a belly button. I think if there was more representation in industries such as fashion and media, maybe my scar wouldn’t have been the sort of thing to spread around the school like wildfire. While I’ve never seen a major fashion campaign featuring someone with a belly like mine, I do recognise that generally speaking I’m very much over-represented in other aspects. I’m a white, slim, cisgender, heterosexual person, and there are far too many campaigns full of people like me. That’s wrong. I want to see more representation for everyone, including different races, religions, sexualities, genders, sizes, disabilities, visual differences and more. I strongly disagree with the idea you have to have first-hand personal experience of something to recognise and uplift the fact it’s an issue others are dealing with. I think it’s so important we all fight for change that will positively impact others and not just ourselves. With a background in fashion this is the sector I’m most interested in seeing change in. There’s such potential for great change, we just have to get the people with power in the sector to listen. Further representation would trickle down and could impact public perceptions. It could genuinely change people’s lives, not only in how they see themselves but with how they’re treated in society too.

It matters.

You’re doing amazing things on social media with This Thing They Call Recovery, why did you start this page and how has the community grown? 

Thank you! This Thing started as a personal blog while taking time out of university for my health. I wasn’t well enough to do much with it at the time, but it gave me a low-impact hobby I could turn to when the boredom struck. 

After university I went onto college in order to add to my BA with a qualification in graphic design. I still wanted to work in fashion until my second year where I had to drop my studies from full-time down to part-time for health reasons. I was becoming more and more engaged with the chronic illness community online, I was learning more about what disability could mean, and I started identifying as disabled myself. I changed my mind, and decided I wanted to work in the health sector instead of fashion. Being too ill to take on any internships, and with a portfolio of college work that now wasn’t relevant, I decided to set up social media pages for the blog. I figured I could practise my skills, hone my style, and end up with some pieces for a portfolio. I never expected it to grow as quickly as it has, with now over 20k people following in 18 months. 

I was feeling a bit lost before starting my blog and reading others. I couldn’t relate to my peers anymore and found myself in a new medical space. But I couldn’t relate to anyone there either. I was always the youngest person in the waiting room by several decades, and it was evidently clear that none of the messaging there was aimed at me. From the posters on the walls, to the leaflets on the table, to the websites I was directed to, it was all very clinical and cold. Nothing had any personality, nothing was aimed at young adults and nothing seemed to have vibrant, complex individuals in mind. I’m not merely a statistic for your pie-chart, and so now I make health content that doesn’t look like health content. My work is full of colour, illustration and hand lettering to speak to the human side of ill-health. I think that’s why people resonate with it, and choose to follow along. I now work on a freelance basis with different businesses, charities and individuals that share my values and want to see change in the industry. I’ve also just launched my own range of t-shirts which is a nice full circle back to my fashion background. The sick and disabled deserve nice things too, pieces that speak to our experiences. I’ll always advocate for that.

Can you talk me through how you and Ryan have navigated your conditions and any advice you would give to someone with an illness or disability about dating/relationships.

Of course! Ryan has never known me healthy. In fact I ended up with ME just a few weeks before starting talking to him – although I didn’t know that’s what it was at the time. Sometimes it makes me sad, that he’s never seen me to my “full potential”, but at other times I’m glad I know he can’t compare me now to me then. I know for a fact he’s not waiting for that version of me to return, and I recognise that’s a worry (unfounded or not) that others deal with. 

Ryan’s always been brilliant about my conditions. We talk about them often but he also just treats me like he would do anyone else. In the past my low self-esteem made me feel like a burden for being sick, but I know now that’s not true. Ryan’s not a saint for being with me; he’s simply a decent human being who sees me as a person. All relationships involve care, just because mine is maybe a bit different doesn’t mean our relationship isn’t equal. We care for each other differently at times, but we’re both there to support each other in the ways the other needs. 

In terms of advice, I’d say to bring up your conditions as soon as you feel comfortable doing so. I’m in no position to tell anyone when that might be; it might be before meeting, the first date, or a few weeks in or longer. Your condition(s) don’t make you less-than, and if anyone makes you feel like they do then know that is absolutely their problem to unpack. That’s not on you. I want people with chronic illnesses or disabilities to know that you’re not only deserving of a relationship, should you want one, but a good one at that. You shouldn’t have to settle. No one is “settling” for you if they’re the right person. You bring so much value that you probably don’t even realise and you deserve a nurturing relationship that’s full of laughter in between the hard times. In terms of intimacy I’d say be as honest as you can about what you need. These conversations aren’t a mood killer. Your partner should want you to feel safe and comfortable in an intimate setting. You’re allowed to have scars and tubes and bags on show. You’re allowed to use aids. You’re allowed to voice concerns about pain. You’re allowed to need rest breaks. You’re allowed to not want it. These things shouldn’t need to be hidden. Your experience is just as important as anyone else’s.

As lockdown is being lifted, how has COVID and isolation been for you? 

So, as I’m writing this I’m 165 days into self-isolating and am leaving the house for the first time tomorrow. For a doctor’s appointment… Typical. I’ve found lockdown lifting far more stressful that it starting. I’m higher risk, and I’m really scared about flaring my existing conditions if I caught COVID. It was easier when I wasn’t allowed to do anything, now I’m having to choose not to, and that stings. The hardest part has absolutely been isolating away from Ryan because we both live with our parents. I’ve seen him three times since the middle of March, and it’s hard having to tell him he can’t come over. He completely understands, but I still hate it. When you’re chronically sick you never really feel safe. I don’t feel safe in my own skin and I don’t trust my own body. Seeing Ryan always made me feel safe. Now that feeling is gone and I miss it more than anything. He absolutely still makes me feel better, but that sense of pure safety has been snatched away and I’d really like it back now.

Can you talk me through your volunteering with Changing Faces UK and why you got involved in the charity. 

I started as a volunteer campaigner for Changing Faces earlier this year, a charity for everyone with a mark, scar or condition that makes them look different. As I mentioned, I was bullied for a long time for my visual difference. I want to help make sure others don’t have to receive harassment for theirs. While we work on changing public perception, I want to ensure no one is going through it alone. The charity does brilliant work supporting individuals and raising awareness and I’ve loved working with them so far. It’s only been a few months, but I’ve already gained confidence and insight, as well as made friends. Having the team Zoom calls over lockdown has been such a great distraction from the world, and it’s been a great way to meet new people in this strange time where I can’t leave the house. The charity and everyone that works within it is so friendly and optimistic without being dismissive at all of people’s struggles. I’m proud to say I’m a small part of what they do.

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This is my why. This is why This Thing exists. This is why I’m here, building a community, working with brands, launching products. This is what it comes back to. So often when awareness of certain conditions is raised, we focus on symptoms. Now absolutely this is important, but I think that’s where the conversation just begins, and it definitely doesn’t end there. Symptoms are only the beginning. Years ago when I was new to this whole chronic illness thing, I read up on all these different symptoms and then I didn’t know where else to go. I already knew I had them. Where was the information on how to live with them? Not cure them or treat them, where were the people living with them? Once I found this community online, I instantly felt better. Because we know what it’s like. We all have different conditions, or different experiences with the same condition. But we all have some shared experiences in some way or another too. We all have lives impacted by our health. Perhaps our relationships are impacted, our family dynamics, our friendships. Maybe our independence has been affected, or our education, our ability to work or travel. Maybe we’ve lost hobbies. Maybe how we see ourselves is different now. Maybe we’re struggling to relate to our peers, wrestling with the idea our lives no longer mirror theirs. Not all these impacts will be entirely negative of course, but there are differences that happen. And that’s where we relate to eachother. This is where a more true understanding can come from. This is the stuff that employers and teachers and partners and families need to know. Everyone should be more aware of these things. But we live in a society that doesn’t like talking about it much. We live in a society that finds illness awkward and uses the word ‘disabled’ in hushed tones. I started This Thing because I want to help in the fight to change that. I started This Thing because I believe our experiences are valid, and so is how we feel about them. Your story matters. Chronic illness affects our lives as much as our bodies, and it’s time more people knew about it. What else do you wish people realised?

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