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Diversity is More Than a Bra Size: What It's Like to Be a Woman with a Disability in the Lingerie Industry

Photo Credit: Rene Connage for Models of Diversity

Photo Credit: Rene Connage for Models of Diversity

Today’s guest post is by the founder of one of my favorite lingerie brands --- Catherine Clavering of Kiss Me Deadly. Catherine started Kiss Me Deadly after her disability made it difficult for her to work in her chosen profession of psychology. In 2012, Kiss Me Deady won a UK Lingerie Award in the category of Favorite British Lingerie Designer. If you want to keep up with Kiss Me Deadly, you can follow Catherine on Facebook, Twitter, and Tumblr. This article is the third in an ongoing series on approaches to diversity that aren't frequently talked about within the lingerie industry.

Of all my disabilities, the one that means I can't wear knickers is probably the most blackly hilarious, when you consider that I run a lingerie brand for a living.

It's far from my only disability, which is why this is my 57th draft. I began with a more educational format, then realised that was disingenuous. There are so many forms of disability --- mental health, sensory, learning difficulties, chronic illness, neurological problems, genetic disorders, injuries, limb amputations... all the way through to just plain getting really old. I can't tell you much about most of them. And if I start on a comprehensive explanation of my own, I rapidly end up at a very unfunny 5,000 words and me in a slough of despair, because I habitually partition my health into manageable chunks.

So here's the abstract, followed by how my disabilities affect my relationship with the world of lingerie.

I've got M.E/C.F.S (otherwise known as Chronic Fatigue Syndrome) which means I'm perpetually knackered, in pain, brainfogged, hypersensitive, migraine-y, sleep disordered, and grumpy. Wait, no, I've always been grumpy! I'm pretty certain the rest of them are symptoms though, plus a bunch I left out. It gets boring.

I also have I.B.S., which is as grim as you can imagine for a digestive problem, and Lichen Schlerosus, a painful genetic, auto-immune skin disorder of the genitals. In addition, I have vulvodynia (chronic and acute genital pain. All the forms of it, plus a few rare ones), and a hemophilia-type blood disorder called  Von Willebrands if you're a mature, sensible adult (or "Von Willywotsit" if you're me).

I say disabled rather than sick because I can still do most things if offered the right circumstances and enough time (plus also some chocolate and painkillers). I've been sick for 10 years, and I'm lucky that I've found a way to work and live with it, at least so far.

Was any of that what you expected when I say I'm disabled?

Viktoria Modesta for Kiss Me Deadly

Viktoria Modesta for Kiss Me Deadly

If you mention disability in lingerie circles, or fashion circles, or most of the western world, for some reason most people start talking about wheelchair access. But not only are people who use wheelchairs a small proportion of people with disabilities (< 8% in the UK), visible disabilities of any sort are the minority.

You might be saying, "But fashion is a visual industry, of course we would represent disability visually." However, there are two problems with this:

  1. Great, except when was the last time you saw any disability represented? Cora and I keep a tally of models of colour at trade shows, but neither of us has ever even asked if there were any models with disabilities. The one time I used one (shown above), I ended up in a fight with some of my retailers about it. The model herself said most photographers like to either cover it up completely, or make a “thing” out of it.
  2. If our idea of disability revolves around visible problems, I'm screwed. And not in the fun way. Ever bitched about the woman on the stairs in front of you going too slow? Or the one in the supermarket aisle who has just ground to a halt inconveniently? Or the woman who looks fine but is taking up a disabled seat on the bus or a parking space?

Yes, that could have been me. Because I look fine, I really do... especially since I discovered that blusher is the key to looking energetic (not concealer), and I'm usually wearing about two inches of make-up with a fine layer of modafinil, caffeine and painkillers at events. And I'm thankful for it, because it means I can avoid the increasing harassment those of us with visible disabilities are facing.

But it doesn't mean I can do everything you do. I'm walking up those stairs slowly because each step hurts, and I'm already out of breath, and I'm not entirely sure where the steps are, and my balance is terrible, and I wore heels (which are great camouflage for why you don't walk, but a terrible idea when every trade show venue has three flights of stairs to the toilets).

I've stopped in front of you because I'm overwhelmed by the messages my own body is sending that Everything Is Wrong, and I probably don't even know I've done it. I'm using that chair or that space because if I limit the amount I do, I have a hope in hell of making the stairs or the entire way round the shop, maybe even at a reasonable speed!

Different people have different problems and need different things. You don't know from looking at us what's going on inside. And we all know this, because how many times have you shown a mask to the outside world?

While we're on the topic of photography and image: it may no longer surprise anyone that I am absolutely and utterly opposed to anyone thinking they can judge someone's health from their appearance, or that making anyone feel ashamed of any aspect of our bodies is in any way health promoting. Nor will random people saying “but you look healthy!” or “you're still very sexy!” in any way improve things. A pox on thee!

So that's the whole of the fashion industry dismissed relatively rapidly... but what about the specifics of underwear?! I mean that's what we're really here for, right?

Tanja Kiewitz in a 2010 ad for the nonprofit Cap48.

Tanja Kiewitz in a 2010 ad for the nonprofit Cap48.

Generally speaking, I've given up wearing lingerie. But then, I've largely given up wearing anything that isn't basically loungewear, so I'm hoping no lingerie designers take that personally. I have a special issue with bras and knickers.

With bras, my problem is the obsession with this abstract notion of a good fit, namely, that someone else looking at you can decide what size you should wear. If I am standing in your shop and trying on bras I do not want to fight with you about how I “should” be wearing a band size down or a different cup size or whatever. I'm a cup size different one week out of every four (though, to be fair, this was true before I was ill).

Mostly though, it's not up to you. You aren't the person who will rapidly develop a band of pain neatly mirroring the bra brand, nor the eczema at particularly tight spots. My breasts will hurt whatever I get, whatever size I am at the moment, because they hurt, because everything up to and including my damn eyeballs hurts. And I don't want to explain all of this. I just want to buy the thing I like and go. I wear my bras for fun, for effect, and for a certain look. I don't wear them for support or a perfect fit because it makes no difference to my health, so I'm going to leave it off my very long list of things to worry about.

My issues with knickers stem largely from my vulval (genital) pain. About 16% of women experience vulval pain at some point in their lives, though happily it goes away for most of us. Lichen Schlerosus is much rarer, but whether your pain is short term or long term, the first thing that you discover is that anything touching your genitals aggravates the pain.

A seam in your crotch is like a cheesewire covered in sandpaper. Thongs are instruments of torture. Don't even talk to me about knickers with tight elastic on the legs, or god help us, a non-breathable fabric gusset. Since I developed hypersensitivity too, I've become insanely delicate about leg shapes, gusset width, waist bands, scratchy labels, and all sorts of other things.

Since giving up knickers, I can tell you that there are four main reasons to wear them again:

  1. It's really cold in the winter without them. Seriously. I was very glad when I discovered drop crotch harem pants, even if they are the most hideous garment ever.
  2. Modesty. No miniskirts for me! This seems to be the main issue for most women who have vulvar pain and don't abandon pants. Wearing knickers is such a basic cultural assumption that they can't imagine stopping without spending the whole day thinking “Argh! I've got no underwear on! What if I get run over by a bus? What will the hospital think?!" Happily, if I get in an accident, I will prioritise stressing out about other things --- like dying or going bankrupt.
  3. Periods, or other leaking fluids (see below).
  4. Fun, or aesthetics, or aesthetic fun. In other words, because you enjoy them. I really can't over-recommend just enjoying things as much as you can.

If I ever give up Kiss Me Deadly because I have made so much money that I can enact my Scrooge McDuck fantasies and just start pushing it around with a small dump truck, I'm going to start doing a range of knickers for special health issues. Predictably, I've spent some time with my gynecologist talking through the things she sees people wishing for (different widths of gussets is a major issue, as is said elastication level thereof), but for some reason this sort of thing does not get the same level of publicity that breast pain and bras do... even though a huge number of women have vulval pain or other genito-urinary issues.

I can only ascribe this to the distinct lack of "sexy" involved in the topic. The OBSESSION of the lingerie industry with making everything sexy --- in a very limited stereotype of sexiness --- is starting to become a huge bugbear for me.

Which leads me into when I do need knickers, which is when I have a period. I can't be doing with inserting things, and I bleed like it's a superpower. I need knickers that are comfy, that pads fit round sensibly (rather than the wings getting scrunched up and tangled), and that can cope with serious flow. Also, that can go in the washing machine and dry fast.

I do not need to be sexy. For starters it's not my knickers that make me sexy, thank you very much. Nor is it my stockings, in spite of their associations, as I also wear them for practical, gusset-free reasons. Sex is great, but realistically, in a choice between flattering black lace bikini cuts and something that fits a pad neatly, I'd go for the latter every single time.

Britain's Missing Top Model

Photo via Britain's Missing Top Model

So what would I like to see from the lingerie industry? Well, not soft bras and allegedly patent pending pants, oddly enough.

  1. Diversity is not just about size. Let's see and talk about different disabilities and health needs, please. Because it's been an awfully long time since Britain's Missing Top Model.
  2. And when we do that, can it not always be about being sexy? Can we get real about some of the horribly practical needs?
  3. Can we stop thinking that we can judge a book by its cover? None of us have insides that match our outsides. It's just a bit more true for some of us than others.

Cora Harrington

Founder and Editor in Chief of The Lingerie Addict. Author of In Intimate Detail: How to Choose, Wear, and Love Lingerie. I believe lingerie is fashion too, and that everyone who wants it deserves gorgeous lingerie.

60 Comments on this post

  1. Lianne Vessier says:

    Thank you for putting this up. I have recently become a wholesale customer and i am also Disabled. I have osteogenesis Imperfecta and Fibromyalgia among other problems. Yes i love underwear but man do I ve issues too, black knickers never stay black is that just me or am i the only person who looks like they have dip dyed just the crotch? Sexy is just out of the question for longterm use , but having huge bangers makes me have to endure the scaffolding in bras. Please let your ambition come true x

  2. Evija says:

    Brought here by the KMD Breast Cancer awareness article. Actually, I only just noticed Viktoria’s leg. All this time I’ve been a fan of KMD, and I needed to look at the image four times to notice there is something out of the usual. Could this mean there is hope? :)

    All the best,

  3. Monique says:

    I am bowing at your feet (figuratively) right now. I am plus size, have fibromyalgia and sensory issues, so underwear is a huge issue for me. The past few weeks my husband has had to help me put on my knickers when we go out (for as you list, modesty and bodily function issues). I don’t have time to worry about sexy or the newest patterns etc. I want something with no seams, no tags, no tight elastics and a breathable material that stretches and shrinks without staying stretched out that I can hike up past my belly button so it can handle my frequent bloating. moisture wicking for the hot flashes and leaky bladder would be great as well. Give me a bra that supports without giving me a red itchy band ring, wires touching me anywhere, no hooks I need to bother trying to do up but also something I don’t have to step into and wiggle into and isn’t my 80yr old grandmothers cross your heart bras. Since there is not one product on the market to fit my needs, I also live in loungewear and commando at home (and occasionally in public lol)

  4. sol says:

    This was extremely interesting…
    Thanks for adding to the conversation.

  5. Sophie says:

    WoW!!!!!… What a or-inspiring write up!.. I love how up front and honest you and all the ladies that have commented are!
    Well done for being so honest when there is so much pressure in this world to be body beautiful!..I too am ‘classed’ as disabled because I have crohnes disease, I have had 3 major bowl ops leading to a none reversible iliostomy (stoma)..I cannot for the life of me find sexy feminine knickers that are high waisted/deep enough to cover my colostomy bag!?… Any advise would be great!?… #sickofgrannyknickers

  6. Dan says:

    I love the fact that Catherine is so open about her disabilities, especially in terms of M.E. as I too am lucky enough to have it. I have a great admiration for her to be able to not only run a company but produce some of the most beautiful lingerie I have come across ( just wish I could afford more of it!). I honestly wish I knew how she manages this as I can barely manage to run a house. Anyway I’m just grateful that Catherine is willing to be open about her disablities and help people understand that just because you look ‘ok’ it doesn’t mean you are, I look like a normal 24 yr old but like Catherine I’m in constant pain, confused, dizzy and a whole host of other symptoms which mean that actually I’m not ‘ok’.

  7. Catherine says:

    I am totally keeping a list of disability friendly projects to work on in the event of being post-scrooge mcduck, yes!

  8. Artsieaspie says:

    When you’re done Scrooge McDucking it up, could you add some sensory-friendly bras to the list of Things That Need To Exist? I’m autistic, and the sensory disregulation that comes with it is quite extreme in my case. I have SO MUCH trouble finding bras that I can wear, and it’s getting worse as time goes on – there’s just one brand, available in just one store, that it’s physically possible for me to wear. (And the Boob Fairy was generous with me, so going without isn’t really an option.) Most bras are a confection of non-breathable fabric, scratchy lace and diggy-inny wires and clasps that I just can’t handle at all. I’m starting to think I may seriously have to start making my own…

  9. Hannah Boal says:

    Oh my god thank you so much for writing this! I also get pains which means I have to abandon pants. I have CFS & Hypermobility syndrome so I pretty much live in pain and lingerie most of the time can contribute to this! A lot of the times I go without and just wear a bandeau underneath my clothes (I’m a GG/H cup though..) as my pain levels are too high! Wish more lingerie brands understood my needs haha!

  10. firelizard19 says:

    I’m with you- I have minor psychological disabilities, such as clinical depression, slow processing speed, and ADD, and have spent most of my life learning to stick up for myself and not to hide them- I don’t tell everyone I meet, of course, but if it comes up in converstion I don’t skirt the topic either- I say “oh, yeah, I’m spacey today because I ran out of my meds, picking them up later.” Or “My professor refused to give me an extension on my paper until I made him re-read my disability accomodation letter explaining why I can’t write it in the same time as others, I want to kill him.” Mental stuff is a whole different bag of worms, but we deal with the same *censored* as those with less-obvious physical disabilities. Soooo many people don’t even believe my issues exist, and the same people are the kind who will assume you’re “just being dramatic” or “taking advantage” when you explain why you have to use a handicapped spot. I really hate that part of the working world, too- for the first time in my life, I am advised that I absolutely have to hide my disability actively, which I hate! I take pains now at work or talking with colleagues outside of work to hide something I have spent most of my life learning not to be ashamed of. I never sat “therapist” or “psychiatrist” when I request off, always “doctor” (accurate, but deliberately vague). I never say the name of what I’m taking in passing, always just “meds” or even “vitamins”, if I need to take them in front of someone. I hate hate hate having to hide it because I know you can’t admit to having any issues that might be construed to interfere with work without losing your job- they will never admit that’s why, but you’re very likely to become the “problem” employee once they start looking for the pattern and making the disability connection, even if you do just as well as your peers overall.*puts away soapbox*

    Sorry, that linked article, and what you said about invisible disabilities really struck a nerve. I’ve been there. I can’t imagine having to deal with physical pain all day like you do, either, but I have some small insight into the trouble any small deviation from the norm causes in any work, let alone in fashion- and because people are basically forced to hide these things, the existence of people with less-obvious disabilities gets erased in public forums, especially in fashion where appearances are key.

  11. Mary Keifer says:

    Wow! In a world where it is increasingly becoming more individualized and less community/family support, it’s great to see these responses of women who are dealing w/all matter of issues that don’t see the light of day normally. Fifteen yrs of dealing w/migraines, doctors (on occasion) and raising children, I’ve had many people who think I’m a “non-participant” because there just isn’t anything left for anyone else after my husband and children. I’m also one of the minority who get clogged glans in their clitoris that can swell and become irritated w/wearing the wrong pants, shorts, shapers, nylons or having sex. Then it takes weeks to get it back to normal. The longer I can go w/o a flair-up the better off I am. Yes, I’ve talked to and visited w/an OB/GYN and she wasn’t any help. On top of everything else, the total lack of energy,due to having had Mono and the days migraines steal from me, make things a bit more interesting. For all those who take the time to read this here are some things that have helped me on many different levels.
    1) Magnesium Malate and Doctor’s Best High Absorption-basically any Magnesium whatever that ends in -ate. It has helped w/the sore muscles, constipation which causes other issues and side effects. Research it! Many problems I was having was from a magnesium deficiency due to being dairy, wheat and soy intolerant. No, I didn’t go into the drs as they have a strong tendency to give meds for the symptoms and not find a solution or reason for the problem and many of them aren’t big vitamin fans. The meds make me worse not better.
    2) Chiropractor-found one who has experienced migraines himself and he is GREAT! Has helped w/that and digestion problems I’ve been having due to taking Omega 3 w/lemon oil. The lemon oil totally messed up my digestion system. Also, hooked me up w/Vit D3. It has helped boost my immune system (instead of being sick 2 or more weeks, it’s a week or not getting sick at all) It has also perked up my energy levels.
    3) RESEARCH Activated Charcoal!!! The reviews I’ve read are from people who have IBS and other digestion problems. I was given some to try and couldn’t believe how much better my gut felt and I didn’t look pregnant either. :-)
    I hope this was helpful for someone if only knowing there are others out there who are dealing w/things no one else can see. Know all about going quiet, weird muscles in face showing pain (my husband can tell) not being able to put hair up as head it way too sensitive, telling the fam to kiss the right cheek not the left as it hurts me if you do, walking w/head down because of pain and the rest of your body doesn’t work right.
    Prayer for all who are going through all this stuff daily and hugs (gentle ones)

  12. Thank you, thank you, thank you Catherine for being brave enough to step up and share your story with everyone. This is by far my favourite TLA post to date, and I know your honesty will have touched so many people on a personal level.
    I remember you telling me about the ME but to think that you are dealing with other conditions on top of that is incredible…especially regarding the nature of them and the fact the you are such an influential character in the lingerie industry – INSPIRATIONAL!
    I am still living with Fibromyalgia and CFS…I’m winning at the moment but the days of not being able to wear a bra, have sex, lift a kettle, walk stairs or dress myself are still all too fresh of a memory! With conditions like these you relish the good days and accept the bad for what they are….well done for remaining so positive (with just the perfect amount of grumpy – I love a bit of grump).
    Catherine, I salute you!

  13. dee says:

    saw you’re a sugar addict, so though you’d enjoy my website. Love the pics of the disabled girls, they should showcase at least one disabled model in every major fashion mag once a month, with a bio, so that people get used to seeing sexy people with disabilities as real and normal. I have CFIDS/ME, and the terrible IBS. I’m sorry you can’t wear your underpants but it will inspire you to new things and that’s some good out of the bad.

  14. djunia says:

    As an older, post-mastectomy woman with Ehlers-Danlos, bras are really important and really difficult. I have dislocated my shoulder in the past trying to get into a racer back top. Sports bras dent and bruise my squishy skin (another lovely part of EDS) and anything tight will leave marks and small cuts. My reconstruction needs support to keep the skin from stretching. Scratchy lace thingies just won’t do. Same thing with elastic around legs and waist. Fortunately, really cheap hanes scants don’t have elastic legs and elastic at the waist is covered.

    It is a relief to hear others with similar “fussiness” about lingerie. I even got attitude from a Macy’s fitter about needing to figure out what size I was post-reconstruction. Nearly crawled under a rock.

    Carry the banner, sisters!

  15. Katrina says:

    All I can say is that I was very interested to hear your side of the story. My mom and I actually had a discussion the other day about “invisible” disabilities and how people who have them are often shamed. My mom had a friend with chronic pain who was told “well at least you don’t have cancer. At least you have all your limbs.” Disabilities are not about competition. It’s not about who has it worse. We should have compassion for all people. I admit that I’m one fo those people that gets annoyed at those who randomly come to a halt at the grocery store, but I will be more understanding now! Thank you for lending your perspective and knowledge on this very important but under-discussed topic.

  16. Lyndz says:

    Love everything about this. Thank you.

  17. UpliftMaximizationTechnician says:

    This is one of the best articles I’ve ever read here, so insightful and…inspiring. As a professional fitter I have worked with many wonderful women with both mental and physical challenges. I too will say that though many women feel intimidated by a “professional fitter”…the trick is shopping around and finding the person YOU feel comfortable with, who listens and understands your particular needs. If you need a period bra because once a month your breasts swell, you…get a period bra. But enough about the politics of fitting, lol. Catherine, you have reminded me of a few of my most memorable and inspiring women. I’ve met women with Down Syndrome, Mental Illness, Chronic Pain sufferers and as a post mastectomy fitter, women dealing with post surgical and radiation pain and loss of sensation and mobility. Skin conditions are also something to note. Women with skin conditions such as severe psoriasis and hirsutism due to PCOS, I applaud for being brave enough to come in and bare their bodies to a complete and utter stranger. A few of my clients have also confided in me when diagnosed with an STD, especially herpes, it seems buying underwear for them is sadly, an exercise in shame and self loathing. As a fitter, treating your client with specific needs no differently than anyone else is the goal, of course, but addressing certain issues and taking the extra time to assess “feelings” (both physical and emotional) is key. Also, the first bra may not be the right one. It might not be the second, or third, but eventually, with communication and patience and a bit of experimentation, we’ll get the one that works! And then pray to the heavens that it’s not discontinued, lol. Thank you Catherine for an amazing article, it’s much appreciated!

  18. Becky Magson says:

    Catherine!!! Is it wrong that I feel excited I’ve ‘found’ someone else with similar disabilities as my own?! I have fibromyalgia and IBS amongst other things and your experiences ring true in so many respects. What I absolutely deteste about invisible illnesses is the judgement you face which often is of negative effect, such as walking slowly or needing to sit down. It drives me insane that just because I look okay, it’s assumed I’m just an annoying pain in the ass. I work part time as a model but haven’t worked so much recently because of my health, frustrating when I really love doing what I do and I don’t have the energy and am in pain or I don’t get a gig because my conditions aren’t understood.

    I’m with you about the pain from bras, I always seem to feel everything of a bra’s construction and am so sensitive which makes me incredibly picky (and rightly so). I really hope you do create a line with disabilities in mind, I would totally be interested.

    Becky x

  19. Marion says:

    So much truth in this article ! I wish there were more people like you around.I have learnt to suffer in silence and live with pain at the age of 5. Learnt it the hard way. When you are that age and feel a pain like someone is running electricity through your chest your first reaction is to tell your parents of course. And their first reaction is ? To tell you to stop playing sick and go do your homework ! This is how I learnt to deal with pain silently cause talking about it just resulted in me being laughed at in addition to it. Today I am 32 and I know this pain (that is still present) is a psycho somatic response to stress. It took many doctors before one friend of mine who was studying medicine told me what I really had. Of course since the age of 5 I found out how to deal with it and live on, putting on my mask of “everything is fine”. I could be facing you in public suffering pain that would bend you to the ground and you would not even notice a thing because I would be smiling at you.

    But that’s not my only health issue. The way things are I sometimes feel my age should be read 82 stead of 32. But once I’m out in the streets no one would ever notice how bad I can feel. The only one who really know about it is my girlfriend. And thank god for having given me such an adorable, helpful and comprehensive person.

    So when I read your article I just feel like this could have been written by me. And I am happy to see there are people who can understand what I am going through.

  20. WideCurves says:

    Excellent, and much needed post (and comments). Thank you!

  21. Billie Jo Moquin says:

    I would like say this is a great post. I have been fallowing for awhile but this is the first time I have written. I am happy that the idea of non visual disability came up. I do not suffer from this but my son does. It is hard as a parent to see the way peaple treat him knowing why he is doing something. My favourite part of the article is the fact that you work in an industry that most peaple may say no to because a certain disability makes it harder. I tell my son he can do anything wants to do, he may have to work harder at it, may have to find different ways to deal with situation but if it is something you want to do then try. As per not being able to wear underwear, it is not an idea I can say I have ever thought of. It is not covered in the media at all, it has given me some new ideas as well as points to ponder. Thank you for sharing, and I hope you get your scrudge mcduck dream.

  22. Amy says:

    Thank you for your insightful post. Although many disabilities are not obvious visually, I’d like to see more body-positive images in lingerie advertising. Not just the token plus-size model or black lady, but true diversity. Let’s see amputees, women with sticks, etc… I’d like to see adverts that show all women they can feel good about themselves. In fact, a Swedish (i think) department store showed better sales using mannequins which looked more like the normal women of different shapes and sizes (i reckon it’s easier to see what the outfit would look like ON YOU, so it’s no big surprise) , so what’s stopping the marketing machine?! Until I read that the model above had a disability, I didn’t even notice. I saw how glamorous she looked and how pretty the underwear was. Isn’t that the point of marketing anyway? To showcase a product in a way which makes you want to buy it?

  23. Halle says:

    Thank you for this article, your openness and your insight! I myself suffer from Chronic Fatigue Syndrome. It played a huge role in not finishing school, my divorce, and leaving a very good job to pursue my own designs. For years doctors told me I needed to deal with my “mental heath disease” until I actually found one who listened. Since then I have come a long way, but still deal with wanting to sleep all day to avoid the pain :( One thing that has helped tremendously has been meeting other independent designers with similar interests. It seems there are a lot more of us out there than one would suspect. We’re like a band of pirates- outcasts with a niche.
    On a different subject, I know one thing that has helped me deal with my period (Why is it that when you are in pain ALL the time, there is usually an issue linked to your period as well? Are we not tormented enough??) is using washable menstrual pads that use a cotton velour lining. I just have to make sure that they DO NOT have ANY kind of topstitching or it is uncomfortable and painful. Those without are heaven compared to the plastic disposable ones from the store. I know it is a switch most are apprehensive to make, but for me it helped.
    Lastly, I have always felt very sad at the emphasis our society places on outward disabilities. Just because you can’t see a disability doesn’t mean it isn’t real and just because you can doesn’t mean that the person considers themselves to be struggling. I don’t think it is healthy to assume that we can overcome this as a whole overnight, but I do appreciate honest articles like these spreading much-needed awareness.

  24. Jocelyn W. says:

    Catherine, you did a wonderful job of demonstrating how important it is to let people – with disabilities or not – determine for themselves what their needs are. I had no idea you had ME/CFS! I have it too. Mine happens to be pretty severe; I’m bedridden about 98% of the time and leave the house only once every few months for doctor appointments. Sadly, because I have issues with pressure, I’m also in the “permanent loungewear” group…I’ve had to give up regular clothes and bras entirely and underwear except for during my period. Anything that presses on my body (bra band and straps, underwear elastic, close-fitting clothing) or registers an unusual sensation (certain fabrics, tags, lace) makes my energy run down about ten times as fast, and obviously I have precious little to begin with. I love your stuff and wish there was some of it I could wear. :( Maybe you do too!

  25. Anna depew says:

    Wow! Thanks for being ballsy enough to share your situation with us! We should be talking about these things and there just aren’t enough people with the guts to bring it up! Im so sorry that so many awful things have befallen you. its amazing that you get out of bed every day, let alone run one of the most beautiful lingerie brands there is! I suffer from a chronic pain condition used to define my life. Right up until I decided that it wouldn’t. It’s not easy having a disability that isn’t obvious to everyone, and its not fun to ask people to make exceptions for you when you’re constantly having to explain what your disease is and why you deserve a little slack! Well done, you.

  26. Kitty Plum says:

    Great post Catherine, I am always impressed with your staying ability at shows, they are exhausting! You are right, you can never judge based on appearance but a good boutique owner should listen to their customer, and often by what they aren’t saying you can advise them, but the word is advise not dictate. I agree with you about knickers too, I have so many customers who want cotton knickers of various styles but I really don’t know where to send them for it. Any suggestions TLA readers?

  27. Alison says:

    Completely with you on judging by appearance. My mum struggles with severe athritis and other conditions. However she goes to the hairdresser every week (partly as she can’t do it herself). is always nicely dressed and always wears make-up. The number of people who say to her ‘but you look so well!’ drives her nuts! She’s on the verge of clattering them with her stick!

    On bra fitting though… as a bra fitter I’m going to stick up for the profession. But, will say good fitters should listen. If they’re used to fitting all types or bras – maternity, nursing, mastectomy or just more mature styles etc – they’d better be prepared to pay heed to the customer’s feedback. Many pregnant women can’t bear anything remotely tight, and many older women have medical conditions (hiatus hernias etc) which mean tight bands are completely unfeasible. Many others have disabilities, sore points from injuries and so on. As a fitter (fitting someone who has asked for that fitting remember) you have to balance listening with persuading those people who just find it odd feeling a bra band after wearing 4 back sizes too big. However the vast majority do go out feeling more comfortable. But yes, if someone comes in for a fitting and says I can’t wear this for this (however brief) reason the fitter should listen and take it into account, whether in the sizing or the choice of style and fabric. And of course we don’t generally chase down customers who’re quietly browsing and force them in for a fitting :)

    I’d add a couple of things that manufacturers seem to ignore – cotton bras other than stretchy things or Doreens. And not just as the face fabric, but next to the skin. And, even more so, stylish front fastening bras with easy to operate clips. I remember them being around 25 years ago but they seem to have vanished. Lots of women, whether through disability or age could do with them. Or someone needs to invent a clip that can be used to modify an existing bra at the bridge.

    • AlexaFaie says:

      I have a wonderful bra which used to be my Mum’s probably when she was the age I am now (so yeah that fits the 25 year mark) which opens with a front clasp. I remember loving it and its a shame I don’t fit it now. I mean, its like a training bra in size so I wore it then. It was in great condition so I think she only wore it occasionally or maybe things really did last that well back then!
      I too wish there were more front opening bras. Or some at the very least. I find the clasps fun. ha ha

      • Alison says:

        Yeah, I had one when I was in my teens. I like those clips too, the ones that are on bikinis usually.
        Unfortunately many of the front fastening bras on the market are huge, old fashioned styles with a row of hooks and eyes. Even most of the very elderly ladies I see don’t fancy them! And on top of that the tiny hooks and eyes are useless for anyone lacking mobility in their fingers or who has sight problems.

  28. Miss Meadows says:

    Great post! I “only” suffer from tinnitus, chronic pain – after a dance related injury – and the oh so lovely IBS, so I feel I’m a bit behind you there… ;) But I’m also – naturally – very skinny. One of the most annoying things people say to me sometimes is “well, if not being able to eat so much because you have IBS gives you a body like that, I wish I had IBS too”. Yeah right! Go ahead and try it for a week… I have been able to work away my chronic pain so much that after seven years (of crawling around on the floor, not believing I would even be able to walk again, with no pain killers – not even the heaviest ones – helping me the least) I have now been able to go back to the stage, using my beloved ballet in burlesque! My only problem with going up on that stage and stripping the first time, was that my skinniness made me feel unsexy. It’s weird to one day hear you look anorexic, and the other day that others would even go so far as to get IBS if it gave them the same body I have. Hm… Another sad part is I’m a model, but I never get to actually model either clothes or lingerie for the retro, pinup, vintage brands I love, because I’m too skinny. Size xs usually fit me well, and I’m really proportionate, just being a dainty girl over all, and photographers usually love to work with me, but when models in the “normal” fashion industry are supposed to be tall and a size zero – in the alternative world I’m too skinny. Weird… But after all the shit I’ve gone through, in the end I’m just happy having fun with what I actually CAN do today! Or maybe it’s just the antidepressants talking? ;) But enjoy every day as much as you can – especially the ones when you fell better! And, like I usually tell people – if you have a bottle of champagne at home, don’t save it for a “better” day. You never know what’s gonna happen. Drink it today! And for us with IBS – drink it today, and then burp to get the bubbles away from you gastric system! ;)

    From reading your post I can tell you’re an exceptionally strong woman! And I hope you can go on working with Kiss Me Deadly for as long as it keeps your mind off the bad stuff! Lot’s of love to you honey! xoxoxoxoxo

  29. AlexaFaie says:

    You may just be interested in checking out the following website:
    I found out about them when they were recently doing a crowdfunder which happily got fully funded (and then some).
    They are designed to be super comfy underwear specifically designed to work instead of panty liners, in their current line can absorb up to 6 teaspoons of liquid, are leak resistant and so good for incontinence or those wonderful surprises when you’re a day or so early. Also great for teaming with pads as they are designed to be worn with them for extra protection.
    Oh and every purchase provides reusable, washable pads for women and girls in Africa.
    They also look a bit cute (if you like black) which is a nice bonus.
    They are working on a range which will include extra hidden support.
    Oh and browsing around just now I found that they have a style (Shapewear Comfy) which includes two sets of removable mini heating pads for pain relief.

    They are not cheap, but they are pretty revolutionary and they DO help less fortunate women and girls out. I’ve not tried them myself so can’t guarantee their comfort first hand, but might be worth trying?

    This was a wonderful thought provoking article because its true that this side of disability is really never talked about. I suppose its because it can be embarrassing but we all know by now that if someone is going to talk about an embarrassing subject it will be you! ;) Keep up the good work!

  30. Meg says:

    Thank you so much for this article. I too suffer from chronic pain and fatigue. When my shoulders play up I physically can’t get a bra on and have had to take time off work as I was too embarrassed to go out with out one. After reading this I have decided that if this happens again I am going in. If my employer moans about the lack of underwear then I am sure I will be able to come up with a suitable reply!

  31. Claire says:

    Brilliant post!! Catherine, Ilove how you just say it as it is, what it is and not fluff the issues up so that it makes others ‘feel better’ reading it, or sexing it up. I also have disabilities, I have what many people call ‘old people’s’ arthritis, ive had it over 10 years and i haven’t hit 40 yet. I get scowled at for having the audacity to use my blue parking badge, and using disabled parking bays because ‘I look fine’ I also get ‘well meaning’ friends telling me how i can be cured if I just take some Glucosamine. Lingerie can be a little awkward for me too, Sometimes my shoulders hurt so much, the bra straps feel like its sawing away at my joints, or i can reach around the back to clasp/unclasp it, or that annoying woman in M&S who thinks (aloud) that my bra would look so much better if i did a few Boot Camps to get rid of my underarm extra ‘tit’ not realising how much i yearn to go back to the time where i could. People are so quick to judge and seem to think nothing of openly criticising others that they know little or nothing about. Your article had me doing lots of nodding, and agreeing. TOO MANY companies etc feel that they have the whole disability ‘thing’ covered as long as they have painted in a disabled spot in the car park. its so infuriating. Im always looking at your store, but im currently a wee bit to big, but as soon as i can fit, you’ll be well on your way to a Mr Scrooge wheelbarrow of cash. Brilliant article Catherine, Thankyou!!

  32. Lori Smith says:

    This is a great post! So many people seem to focus on lingerie that is pretty or sexy, forgetting that many of us need comfortable and practical stuff too.

    More needs to be done to raise awareness of disabilities that aren’t visible too, so thanks very much for writing this.

  33. KathTea says:

    Oh I just HATE it when people think saying “BUT YOU LOOK NORMAL!” actually makes me feel better. While I may not have gone through what you have, I do have disabilities/health issues of my own. Unfortunately in my country I am completely unprotected from getting sacked, should they find out about my health issue. In other countries (as far as I know, UK and Australia), my fellow friends with the same disorder are protected by law or at least supported by welfare should their condition be severe…

  34. Yvette says:

    This is so good to read. I considered starting a lingerie blog myself and may yet. I have Ehlers-Danlos Syndrome, a genetic connective tissue disorder, and most all my joints are unstable and thus painful. I really identify with having a non-visible disability. Even at times when I would be wearing something visible, I tend to cover it up. I’m Black also, and I really can’t bear to give people two reasons to ostracize me, which is what tends to happen, to be frank. Even so, I wonder if I’m doing the right thing.

    I understand the obsession with fit, because I’m obsessed with fit. If my bra (which I have to wear 24/7) isn’t fitting me perfectly, then my breasts will pull my spine out of alignment, even thought they aren’t very large. If a girl has larger than average breasts and her ill-fitting bra is hurting her, I think it’s only natural to start hunting around for a bra that fits better and relieves the discomfort. From there, the impulse to want to help other women is understandable, if misguided.

  35. daisy richards says:

    I always feel like i should feel guilty about having a basket full of ‘period knickers’ and only five odd ‘pretty knickers’ so many people hear about what im specialising in, find that out and think im some kind of moron. But my god i take soft cotton over itchy lace any day. The ‘sex’ aesthetic tied to this industry is so frustrating. Buying for your boyfriend etc. Its about what feels good and Christ if that means pin stripe high waisted cotton granny pants then amen to that!!!

  36. Hannah says:

    Oh my gosh, thank you so much for writing this. I have fibromyalgia and when I’m hurting and oversensitive to begin with, elastic waistbands on underwear hurt like hell.

    • Becky Magson says:

      Hi Hannah, I have fibro too. Comfy and well fitting underwear can be hard to come by. I’m so sensitive to fabrics and stitching and always have to unpick labels which are the bane of my life.

  37. Amaryllis says:

    Well, that was brutal and honest and involved a whole lot of words that people don’t like very much! What a good thing to see. Not that it’s good that you or anyone else has to deal with these issues, but I can’t remember the last time that reading about underwear involved the forbidden word ‘blood’ and practical discussion thereof… which is funny given how much of the time it affects women in their lives. Nice point about fit too – it’s why I mostly shop online, because I can’t be arsed with someone telling me that I’m wrong about what I want to wear – it’s a form of fashion police that we wouldn’t accept elsewhere, so why put up with it when it’s about boobs?
    I get intermittent joint pain, and I’m lucky, I guess, that it’s mostly confined to my legs and so doesn’t impact my clothing choices much – but when it hits my back and shoulders, bras are the first thing to dispense with. I’ve found it speeds recovery time.
    However much I love lingerie (which is a lot!) and dressing up (also a lot!) I really take exception to the very conformist and old fashioned mind set about underpinnings somehow being necessary for the ‘decency’ of the person wearing them, or their ‘sexiness’ or any other human attribute. Because we’ve quite happily dispensed with many of those ideas in outerwear – be it wearing miniskirts or trousers, or dispensing with hats and gloves – and yet it remains so ingrained in our underwear, that going knickerless is either sexy or dirty depending on your outlook, and that the kind of lingerie we wear says more about us than our actions. It seems all out of proportion to the weight that we place on those messages for other items of clothing (although I’m aware those messages get everywhere). Maybe it’s connected to the very closeness and intimacy of lingerie, that it’s easier to feel vulnerable on the subject just by the nature of it’s intimacy? In any case, it was a good, interesting, honest read. Thank you!

  38. Kitty says:

    Loved this article, thank you! I have a chronic pain condition that affects my head and face, and am in the process of being diagnosed with an auto-immune disorder, meaning I can’t wear my hair up, brushing my teeth is painful, I can’t wear my glasses or sunglasses (I love the shade!) and it means I get tired easily too. And I hurt, a lot, 24/7. Just like you, no one can tell just from looking at me. So when I get quiet when I go out, or I suddenly go home without explanation, or I pull those weird cringey faces that extra flashes of pain make, or I cancel plans, or seem to pop pills constantly, that is why, and people judge constantly, because they can’t see what is wrong with me. If they could I’d imagine my head would be a big angry red ball of flashing and horror. For me, my problem is my hair, I can’t stand my head being touched or tight bobbles or bobby pins, I did recently discovered some nifty twist things I can use to put Leia buns in my hair though without added pain. Best day ever!
    I wish you luck and good health lovely!

  39. What an incredibly moving post! I myself am somewhere on the cusp of being officially classed as disabled. It’s a strange place to be, as I try to cover up the problems I have, and yet get grumpy at people (as you rightly said) when people mutter when I get in a lift to go up one flight of stairs etc etc. Over the past year I’ve come to terms with the fact that I can’t do everything, and this is something that I battle with everyday. Making that decision to NOT lift that box and pass it to that person over there, can make the next day a lot easier. In terms of battling with underwear, I can’t comprehend your problems, and I can only hope that someone can manufacture undies for ladies with genital pain. Over the past few years we’ve seen such a change in the attitudes to mastectomy bras and I only hope that this continues!

    If it wasn’t for my problems, I’d dream of being an underwear model, but something in my mind says ‘dont’ be stupid you can’t do that, you’ve got chronic pain from bra strap level down to your knees’. I think it’s sad that I have such a block in my head, and can only assume that it’s because I feel I would get that reaction from others because of the way my problems have altered my body.

    I recently bought and took over a business (that’s not quite ready for public eyes) because I can’t work in my student holidays like I used to be able to. Partly this decision was inspired by yourself, as I know that it was a consideration when you opened KMD, I felt it was a sensible option for me and my health!

    Thank you for writing such a lovely article, and for making people think a little more about others that may look completely fine, but under the water our feet are paddling like crazy just to stay up right!

  40. Becky Mount says:

    I can’t believe I never knew Catherine suffered from M.E. like I do. This could possibly be my favourite ever TLA post; such an eye opener, and so refreshing. I’m feeling crazy inspired and motivated as a result (and must remember to wear blush more often). Thank you for posting this.

    • Becky Magson says:

      It feels like the world is that little bit smaller when you find someone else with the same or very similar condition. I have fibromyalgia and found out a couple of others in the lingerie industry have fibro too. I feel less of an alien and more empowered. :-)

    • Ah Becky I didn’t know… like Becky Magson I too have Fibro and CFS ….blimey we are all coming out of the woodwork aren’t we?!!

  41. Excellent post, Catherine. I’m sorry you have had to deal with these issues & it’s very important to talk about. I think your point about making practical solutions that are not about ‘sexy’ is so important– it reminds me of how much I hate that many breast cancer events talk about boobs (particularly sexy boobs) like they are more important than the people who have them.

    I think your point about YOU knowing what works for you, as opposed to others who may think you ‘look healthy’, etc. is also so important because I think there can be a tendency to assume that we can assess what’s going on simply by looking instead of actually trusting the person you’re dealing with about what works/does not work for them. Additionally, I’m sure the bra fit fanatics that talk about how correct bra fit is essential for everyone’s health must make you batty.

  42. Adzriel says:

    Well said, and well written!
    Oh for knickers that you can wash blood out of! That would be a minor miracle!
    Regarding diversity not being just a bra size though, we don’t even need to go as far as disability to see evidence of that. The fashion industry as a whole caters to a shape. At smaller sizes, that shape is fairly straight up and down, at larger sizes that shape is basically round. I’d like to see clothes of all kinds, including knickers, for the pear-shaped girl!
    Give me knickers with a gusset that doesn’t try to saw my legs off from the inner-thigh! Give me waist-bands on high-waisted items that are actually narrower than my hips! (errm, significantly so!) Give me bottoms on my briefs that actually cover my buttocks, because if they only reach half way over, then I may as well buy a thong, because the damn thing is going to slip and slide and crawl up my arse anyway!
    If you ever do produce knickers with variable gusset widths, then I’m totally your first customer!

    • Emma says:

      So I can’t really speak to the substance of this article, although it was certainly an eye-opening read, but I wondered if you or any of the commenters complaining about “period panties” had looked into Lunapads line of absorbent underwear (wow, is there a less-sexy two-word phrase?): I don’t actually own any, but I’ve had good luck with their cloth pads, and I imagine these would be similarly well-constructed (although the price isn’t great). Just a thought!

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