Queer Eye and the chronically ill…

My partner and I binge watched all of Season Five of Queer Eye recently, and it was delicious. Once again, I fell in love with the Fab Five. I love how they meet people where they are. I love how the heart of their message isn’t to wear fancy clothes and own fancy things but to realise your own self-worth. You are worth having a tidy house. You are worth having good food in your kitchen. You are worth having a skin care routine and a nice hair cut.

Last time I watched Queer Eye, I was a healthy person. And it was easy to be inspired to tidy up the house a bit, do a de-clutter, look at the food I was eating and try and introduce more healthy and home-cooked meals, take a look at my work wardrobe and weekend wardrobe and think about what my clothes projected. This was particularly important when I was thinking about becoming a senior manager. I wanted to retain my sense of fun and quirky personality, but I also wanted to look respectable. Queer Eye inspired me to reassess my wardrobe, incorporate more blazers, and embrace skinny black trousers and funky socks!

It was a different experience watching Queer Eye this time with chronic illness, in my case, dermatomyositis. How can I do anything to improve, or, as the original Fab Five would have said, zhuzh things up in my life?

Food is a struggle; chronic illness has done a number on my positive attitude and self worth; my wardrobe consists of PJs; my house is consistently less clean than I would like it to be, and I don’t have money to upgrade anything; my self care routine some days consists of barely managing to brush my teeth.

So, it got me thinking – how can we, as people with chronic illness – Queer Eye our lives?

Here is what my thoughts are. For those of you who are unfamiliar with the show, there are five hosts, each of whom deals with a different element of their hero’s life. I’ve split my thoughts up into these five areas, alongside the name of the person in the show who deals with this area.

Antoni (Food)

I was tied to an old, somewhat elitist view, that good food had to be locally sourced from a farmer’s market. Bread had to be home-made sourdough. I made my own kombucha and yogurt. I baked my own cakes. I made my meals from scratch with minimally processed food. My idea of lazy cooking was to get a meal box kit. I also ate out a lot – breakfast and lunch most days. Take away was a big part of my food rotation, as were dinners out.

The new, chronically ill me, has to reassess. Now, I eat a lot of pre-packaged steam veg and sides. I also keep things simple with salmon or chicken that I buy and then freeze in portion sized packets. I have embraced pre-made food, as long as it is of good quality. I buy bread and snacks. I eat fruit cups and tinned peaches. I’ve had to give up on variety – I eat a lot of the same things each week, because it is easy to get into a routine of Weetbix for breakfast and soup for lunch. I do still treat myself to take away occasionally, but I try and keep this to a minimum, both for my health and my bank balance. I don’t have much energy to go out, so when we do go, we try and keep things local so it isn’t too far to go and I can reserve my energy.

Top tips – 

• Identify what it is that is stopping you from eating well
• Don’t be afraid of ready-meals, pre-prepared veg and meat, and anything that saves you time or energy
• Make life easy by settling into easy to repeat routines
• Eat small meals, up to 5 or 6 a day, to help with nausea and energy levels

Tan (fashion)

I never really was interested in fashion, but I liked to be relatively well presented. I’ve never wanted to spend much on clothes, so I really love stores that sell basics for reasonable prices. But, now I live at home, in my PJs most of the time. I’ve also put on a lot of weight thanks to a very sedentary lifestyle, and high-dose steroids for the past twelve months.

However, small changes can make a difference, and you don’t have to spend a lot of money. I went through my wardrobe and retired anything that no longer fit me. I might get to wear those things in the future, but for now they are boxed up and put away so as not to remind me of what I can no longer wear. I’ve also gotten rid of any old, torn or stained PJs. I’m spending so much time in them, I want them to be nice. Work was really kind and got me a voucher for a nice PJ place, so I bought a new set. I also went and bought some cheap sets that fit me well. A good hoodie is a must-have, as you’ll be spending lots of time sitting around. Socks are another good investment to make sure that you are staying warm.

Top tips – 

• Put away things that no longer fit
• Invest in one or two sets of comfy PJs and get rid of any old sets that are torn, stained, or don’t fit
• Make sure you have a warm hoodie/jumper and a soft scarf. Sitting at home all day gets cold!
• Equally, make sure you have warm socks or slippers

Karamo (culture)

This can be the hardest part once you become chronically ill. The life we knew has gone, and that can cause a lot of pain and grief. We may have lost friends, family, colleagues, routine and everything that we felt made us productive and worthwhile people.

I no longer work, and at first it made me feel like I’d lost a massive part of what makes me, me. I have always been an active, productive member of society. I’ve always worked hard. I enjoy success and I was very challenged when I was no longer to define that success on what I did in the workplace.

I’ve also had to give up on many things that I enjoy – ice skating, playing guitar, reading as much as I’d like. For many months I wasn’t well enough to go to the cinema or see a play. But then I have more time to read, when I have the energy to do so, and I have plenty of time to watch shows and movies at home. So, a shift in how I engage with culture was needed. And that’s ok.

You may not be able to be part of a workplace community, and you may see your friends less than you’d like, but now we have so much available online. You can find a community on Twitter, or through your local network. Get to know your neighbours and engage in more in your local community. You never know what you’ll find.

This is still something that I am working on. I need to work on not valuing myself by what I produce. I am valuable and valued just for being me.

I’ve also had to cut out things in my life that were draining me of energy and joy. This involved taking a pretty big step and cutting out most of my family. This was hard, especially as getting to know them was a big part of me moving back to Australia. But it was necessary and my mental health has never been better.

Top tips – 

• Redefine your self-worth outside the context of work
• Work with a therapist or counselor if you need help grieving for your previous life
• Cut out things and people in your life that are draining
• Rethink how you can engage with the things and people you love
• Don’t discount local or online communities

Bobby (home)

Ah, Bobby. The (arguably) hardest working on the Fab Five. He redoes an entire house or building every episode! Sadly, I don’t have the money or energy to relocate or redecorate. But, there are still things that I’ve done to make my home life easier.

Unfortunately, I am in a third floor flat with no lift. It’s not at all ideal. My flat is also pretty big. I have two balconies, two bedrooms, a big living-dining room, plus a bathroom and utility room and kitchen. Plus birds!

Don’t be afraid of disability aids! I’ve got a shower chair, and sometimes I have an added support frame over the toilet to make getting up and down easier.

I’ve added some plastic mats around the birdcages and areas where they tend to poop to make clean up easier.

I’ve stopped using my study, so I just don’t use that room which cuts down on cleaning.

I’ve not got money to do much else, but one thing that did make a difference was adding more plants. For some reason this makes the place feel much more welcoming.

Also, think about keeping warm – I’ve got blankets and plenty of pillows in my lounge, and I have blankets and another heater in my room.

In an ideal world, I’d downsize to a flat with lift access. This will be important in the long term as if my condition flares up, there is a good chance I will find stairs very hard if that happens. I really need to get rid of some of my sentimentality and just ruthlessly get rid of most of my stuff. It just takes up space, is hard to clean, and will be hard to move. Downsizing really is the ultimate goal. That’s a problem for future Lizzy.

Top tips – 

• Don’t be afraid of disability aids
• Add some plants if you can to help your wellbeing
• Add blankets and pillows/cushions to keep warm
• Think of ways to make cleaning easier (get a Roomba if you can!)
• Ultimately, think of downsizing to make life easier (and cheaper)

Jonathan (grooming)

I’ve saved my favourite for last. I love Jonathan. They are just a big, warm ball of beautiful energy. Grooming is perhaps the easiest thing for you to incorporate. I know we are tired, but so is our skin!

For me, dryness is a real problem, so a lot of my energy goes into keeping my skin soft. I have switched all my toiletries to a brand that specialises in dry skin and these are all cheap and cheerful and available from my local pharmacy. I’ve also massively simplified my routine to help me spend less time in the shower/bathroom.

I’ve got an electric toothbrush – it helps save a little energy!

I used to have really long hair, but when I started on Imuran (azathioprine), my hair started to thin and I was losing a lot of it. I ended up cutting it all off. This has made life immeasurably easier, and since I’ve stopped the Imuran, it seems to be growing healthily again.

What brings you the most joy in your routine? Just because you aren’t leaving the house, doesn’t mean you can’t do your nails or put some colourful lipstick or eyeshadow on if this makes you feel better.

I used to love getting my nails done, but now I can’t afford it, and I also can’t really afford the energy to do it myself and maintain it at home. So, I’ve kept things simple with plain nails – it makes my life easier.

I also used to love going for facials, but again, can’t afford it, so I try and do masques at home. I’m a big fan of those sheet masques that you can keep in the fridge. On a day when I’m having a flare and my skin feels hot and swollen, they are so soothing.

Top tips – 

• Keep your routine simple, cheap and easy to save time and money
• Think about getting an electric toothbrush to save energy
• Finding hair care hard to manage? Think about cutting it shorter…
• How can you do some of the things you used to enjoy at home?
• Do things that bring you joy – wear that lipstick or eyeshadow, even if you are home all day!

Keeping things Queer Eye

So, there you go. My thoughts on Queer Eye and the chronically ill.

Have you seen Queer Eye yet? What do you think about it? Even if you haven’t seen it, what are some of the things you have done in each of these areas to make your life easier and better now that you are chronically ill? What is on your hit list of things to change?

Remember, we can’t magically fix everything in our lives in one week like they do on TV, but we can set realistic and achievable goals in different areas of our lives to live better and feel better.

As Jonathan would say, can you believe?!

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