Guest post: '#hospitalglam matters because my appearance doesn't reflect the severity of my illness'
Thousands of chronically ill women have followed Karolyn Gehrig's lead and taken #hospitalglam selfies. Here, blogger Jade Hamnett explains why, and says that society - and the DWP - must separate physical appearance from severity of illness
The Chronic Chronicles
Posted on: Wed 04-Feb-15 11:34:28
(30 comments )
Karolyn Gehrig, like myself, has Ehlers-Danlos Syndrome. It's a genetic condition that's caused by a fault in the connective tissue – the stuff that basically holds us together. While the condition has various types, there are some symptoms that are common across the Ehlers-Danlos spectrum: it's incredibly painful, exhausting, and impacts every part of the body from the joints to the organs. And there's no cure. Many of us spend endless time in and out of hospital.
Last April Karolyn tweeted some selfies. Her and everyone else, right? But her photos are very different to the usual backgrounds of partying and having fun with friends. She's framed by treatment rooms, oxygen masks and the wires attached to her body. She's sporting her silver ring splints (worn to reduce joint dislocations) and uses her walking stick as a prop. My favourite is her skin-tight dress that's covered in pills. She tags these selfies as #hospitalglam, and they certainly are.
Since Karolyn's tweets many others have joined in; posting selfies in waiting rooms, after operations or of a high heel peeking out of a hospital gown. So why has this resonated for those of us with disabilities?
Having a chronic illness can be scary and all-consuming. You feel like you've lost control when your body refuses to do what you ask. Decisions are constantly taken out of your hands – about your mobility, ability to work, social life and relationships. And at the centre of that loss is the medical world. Most people don't get to choose their consultants, their treatment plan or their medication. Even if you have a great doctor you are constrained by budgets, research, and availability of treatments.
#hospitalglam is about taking back that control and saying you can wear what you want to, and it doesn't represent how you feel. I'm still a person under the hospital gown.
In the midst of all this other decisions get wrested from you, too - your hair, your clothes and your accessories. Funky handbags are swapped for practical ones that stay put when you're using a walking stick or crutches. A favourite necklace has to be removed because it tangles with wires. You pick new clothes based not on the designer, or because you love the colour, but by comfort so as to reduce chronic pain flare ups. Smart shirts get thrown out because buttons were designed by the devil, or t-shirts discarded because you can't lift your arms up. I was never a fashionista, but I've lost count of the items I've thrown out because they simply don't fit into my world any more.
And if we do dare to put on make-up and nice clothes and do our hair we are often misjudged - “she can't be that unwell”, we hear, sometimes silently, sometimes not. This feeling creeps into the NHS too. I know of many women who won't wear make-up when discussing pain relief with a doctor because they think they won't be taken as seriously.
The Department of Work and Pensions openly judges appearance during benefit assessments. They ask assessors to make notes on “the claimant's appearance, manner, hearing ability, walking ability,” and they will frequently use this ‘informal observations’ section to make comments on clothing, make-up and hair. A comment on my own form actually stated: “wearing brightly coloured clothes, which shows no outward sign of depression”. I was wearing baggy yoga clothing because anything tight was painful, and the assessor made a totally inaccurate correlation between the colour of my t-shirt and my health.
Similarly, I often wear my hair in a ponytail because it reduces my neck pain. On my medical form that hairstyle seemed to equate to an ability to lift my arms, but I wasn't asked whether someone else had done it, which they had.
These experiences have enormous ramifications for so many people trying their best to navigate the system. Due to notes like these made by the assessor, my Disability Living Allowance claim was turned down twice. The two tribunal cases that followed were horrific - I was cross-examined and treated like a criminal. The wait for a tribunal can last between six months to a year, and causes immense stress.
When you have an invisible condition, you can face an additional level of scrutiny and are often having to work much harder to prove how ill you feel. It's not surprising that sometimes I feel like I'm losing myself: my world centres on ill health, doctors’ appointments, hospital stays and physiotherapy. But I'm still a person under the hospital gown. I still like my nails to be brightly coloured, even when my hands are covered in bruises from a cannula, or welts from a blood pressure machine.
#hospitalglam is about taking back that control and saying you can wear what you want to, and it doesn't represent how you feel. While disabled people are already there, society and the medical establishment lag behind. Make-up and smart clothes shouldn't clash with anyone's idea of disability – so come on world, catch up.
By Jade Hamnett
So true, and such an ingrained belief that pain and illness should be visible. I went on a chronic pain management course recently and felt a bit of a fraud because I'm young (OK, 40) and don't limp or usually use a stick etc, and found myself thinking 'these other people don't look in pain!' - despite knowing that all of us had had chronic pain for several years that wasn't being controlled by medication and we'd all had as much physio, surgery, and other suggestions as the medical profession could provide.
If I can't convince myself of my problems, it's going to be tricky at the ATOS assessment shortly...
So so true. I have endometriosis and have to take days off or work from home a couple of days a month. If I look nice going into work I feel as though people don't believe me that I've been ill. So I dress down. But maybe that's a mistake and I should just wear what I damn well please!!
Too true. Wise up world - and look beyond the obvious. If you REALLY want to know how I'm doing look IN my eyes - not at them. Well done to all the ladies (and gent's) out there taking back a little control x
Fascinating. .. I found my "no win" was that if I have anxiety I shouldn't look smart ... but if I don't they assume I'm not coping.
Where is the magic "sweet spot" no one told me I must be in?
Amen to this The times I have been so so ill and my consultant has said 'but you look well' has really p'd me off.I definitely feel teh pressure to look as rough as possible for certain appointments in teh hope of getting things done
It is a shame that the ATOS process is actually crucial to peoples financial (and actual) survival, otherwise it would be nice to do an experiment to see if you get a change in your success rate if you dress to conform to societies expectation of disability or not.
It would be a great way to show the whole system as flawed (which it certainly is).
Also - to suggest that wearing make up etc is a sign of feeling okay is to wilfully misunderstand how women use makeup. It's there as a mask - not just for others but for yourself. Because if you catch sight of yourself in a shop window you might see the stick, the bloating, the thinning hair, the practical handbag but you maybe won't see the exhaustion every single time. I don't need makeup when I'm having a good day, but when I'm shattered, I pile it on!
I cannot agree more! I am so pleased to see this post.
When I am feeling particularly rotten I do often put on make up because I don't want to look as shit as I feel. Special has it bang on saying it is a mask.
Being chronically ill has taken so much away from us, we don't want to 'look' different as well.
try having a mental illness. I'm not supposed to dye my hair pink or smile in public.
I am terrified about my ATOS assessment as my DLA is the difference between scraping by and going under. am I supposed to not wash my hair for a week and wear dirty clothes?
So true. I have chronic lung disease but love wearing make up and nice clothes. I even had my straighteners in hospital last time getting over pneumonia - I still want to be me. But it's a sad truth that we are judged for this - that if we look a certain way, we 'look so well', and so we can't possibly be that ill, and we are frauds. Even doctors fall into that trap, and should know better - 'you look really well today, you've made an effort so you're obviously doing better at the moment.' Well - no, not necessarily. Sometimes I just put makeup on to make my face look less white and drawn and my eyes less hollow, and wear nice clothes because - well, because I like clothes.
Sometimes I don't have the energy, but sometimes I can manage it, and why shouldn't I - why should I always look 'ill' just so people can cope with the fact I am ill and not make themselves feel better with teh 'you look so well' thing. I think we all know this one very well by the sounds of it...
Like #hospitalglam. i'll join in on my next stay.
Great article. I am always trying to hide my chronic illness from the public (wearing braces and icepacks under baggy clothes to conceal them, taking my time so people don't see how much I'm hurting, using different techniques to exit the car safely, etc.). I've been in excruciating pain at the doctors and they really don't see it. They don't see ME, they see a controversial diagnosis, and they don't seem to understand that you have to somehow get by in the meantime while you're dealing with this nonsense. When my issues first started, I was criticized for bringing a laptop to appointments ("How sick can you be?"); I'd brought a laptop and overnight gear because I fully expected to be hospitalized. (But never was … just left to sink or swim on my own for almost 2 years, with no pain meds.) I don't know what the answer is. Fortunately I am able to work now with limitations, but I am sickened by the stories I hear about disability assessments.
exWifebeginsat40 - the article is about invisible conditions, so it includes mental health illnesses too as part of the same judgement. It's the same thing - whether physical or mental health, people are judged on appearance.
My mum's being treated for breast cancer, countless chemo sessions and infections.........but she still rocks the glam
I often get looked at critically when I tell people I'm in daily chronic pain, because I sometimes do my make up etc or I wear a skirt, because I don't use a wheel chair or walking stick they think I'm ok
no its years of hiding pain, not that I'm ok, make up and clothes are a mask to help me feel better and maybe just take the edge off, when im in the house on a bad day.......Im lying on the floor
people shouldn't be judged on how they look, yeah I may have done my hair this morning but it's only because for once my scalp could take my hair being brushed
This post and the one about Performing your disability are two of the best pieces I've read on disability ever.
It's wonderful to know I'm not alone feeling these things, but hurts to know I'm not alone in societies cruel judgements - it's not just me then it means I can't somehow blame it on a particular person or one off experience.
Ah, so fucking true.
My friends and colleagues know when I'm having a bad day, because I'm dressed up to the nines, fully made up, perfume on.
As one of my oldest friends said once, 'I know you can be on the phone to me because you're feeling suicidal, and then come through the door and you'll be looking fabulous with a big smile on your face.'
Plus my wardrobe is carefully designed so that it needs least effort to look good.
When I went to 'perform mental illness' for a psychiatrist's assessment, it took far more work to pull together an outfit that looked like people's perceptions of someone struggling.
Seameadows people have asked me how I'm doing so fabulously with a baby and a blood condition ... always when I'm not (leaning on the pram with back pain, huge amounts of slap on as my anxiety has had me awake for 3 days solid, everything from my current "black with faux fur trim" yummy mummy capsule).
When I'm comfy enough to throw on trackies and a tshirt and go for a walk/yoga I probably look more like an anxiety sufferer with (mild) mobility issues. Oh and explaining why sometimes I can do yoga, other times I can hardly move...
A brilliant article, Jade! I also have the condition and have only recently heard of #hospitalglam. I completely identify with all the feelings expressed here and have also had to adapt everything about the way I dress & look around the physical changes the condition has made to my body, for instance surgery has now left me with one leg an inch & a half longer than the other so jeans, trousers and heels are now out! People seeing me on the outside once dressed and made-up have no idea how long it took me do - a good two hours longer than before my health declined. Hoping more people who have not experienced these problems & snap judgements as Jade explains, will read about & see these pictures and understand more
Great post. 2 weeks ago I got an emergency appointment with my rheumatologist, I was in a big Lupus flare.
I could hardly walk, had pleurisy and pneumonia, but he said I must be managing because I had washed my hair . Are we supposed to walk around like bag ladies?
This is a brilliant post. From one zebra to another, thank you for putting it so succinctly.