Health is not binary. People who are chronically and/or mentally ill may indeed be "sick" (a term with a huge amount of complexity in its own right), but we are not on any given day A) sick or B) not sick. These conditions can be lifelong or last many years, going through flares and remissions. But we are not just "sick", we are people with hobbies, partners, friends, and if possible, jobs. Our illness(es) may feel all encompassing at times, but they are not us. They are only a part of us - people who are just as complex and nuanced as any. And yet, it seems at times that there are absurd standards, perceptions, and expectations about what someone who is "sick" looks like. This only exacerbates our already complicated relationships with our bodies.
I've been some level of sick most of my life. I don't really remember a time when I felt well for more than a fleeting day here or there, and it's only gotten worse over time. Most people who know me are aware of this at some level - I stopped trying to hide it many years ago. And yet, I seem to constantly have experiences where how I appear affects how people perceive not just me, but also the existence and severity of my illness. These mixed up misperceptions serve to complicate my social interactions, the tentative sense of self I've cultivated, and the relationship I have with my body.
If I dress nicely at home, or *gasp* dare to leave the house looking put together, well then I must be recovering and feeling better! Musn't I? If I don't dress up, I've let myself go and am "giving up". Surely. Should I dress more slovenly to match how unwell I feel? Should my pants match my level of pain? So many thoughts fly through my head when someone says, "You look so good!" with a surprised and reassuring tone. Am I supposed to smile and nod? Should I correct them and say, "Thanks, but it's not a reflection of how I'm feeling. Actually I feel like total shit." Awkward...compliments are tricky, and contradicting them is not socially acceptable.
This flows over into the practicalities of daily life. Someone cuts in front of me in line, not realizing how much effort it takes to stand with nothing to lean on when I have vertigo or am fatigued. I'm stuck in extreme heat or cold for an extended period of time, people think I'm being overdramatic or whining, when I feel faint or my extremities become severely painful. How am I to set boundaries and assert myself when there's no "evidence" of what is going on inside me, leading some people not to believe I should have any "special accommodation"? Should I abruptly leave in the middle of an errand? Should I not attempt excurions or travel? Should I not go grocery shopping on my own? Can I ask for a seat on transit? Can I do it without being given a strange look, or getting questioned or judged? Would you treat me the same if I was in a wheelchair or carried a cane? Do my pretty shoes make me a fraud? Can I wear a cute dress when I'm feeling a mess? Without it calling everything into question?
Those who work in the healthcare system are not immune to this either, and it can be utterly confusing trying to predict how a given health professional (doctor, nurse, etc.) will interpret my appearance. If I'm fatigued (which is pretty much always) and choose to show up to an appointment in sweats, they seem to condescend more and slip in questions or about depression and try and push meds on me - nope, sorry doc, anxiety is more my bag and I'll stick with meditating thanks! If I dress to impress, they often act more professional with me, but take the severity if my illness less seriously. It's an unpredictable and difficult dance to strategize around. It doesn't help as a younger person, having some conditions usually relegated to older people. The attitude that a person is too young and spritely, or too put together to possibly have such problems invalidates the reality of their pain, sickness, or lessened quality of life. Keeping a positive attitude and having a friendly demeanour only adds to this counterproductive stigma, but am I supposed to act like a curmudgeon and make myself and everyone else more miserable?
The combination of misguided assumptions/perceptions, and people (health professionals, friends, family, employers, etc.) not taking statements about how a person is feeling at face value, are a terrible combination. Why not just start with the belief that a person is being honest about how they are doing, regardless of how they look? If you're going to make an assumption, why not assume that anything is possible, or that things haven't changed significantly since you last knew how they were doing? Anything else forces the person with the illness to negotiate, explain, and prove (which is sometimes impossible) that they are legitimately unwell. This only adds to the shame and frustration that comes along with the illness itself, already a large enough and complex enough challenge to wrangle. It also makes people who are sick afraid to say when they're having a good day or a good week. The response, "Oh, I'm glad you're feeling better!" or the assumption that this trend is permanent is just another difficult to navigate interaction, laden with shame and often significant emotional pain in wishing it were true. It's easier to hide the good days and avoid the confusion.
Even worse might be when someone tells me they're jealous of how thin I am. In spring of 2010, after one of my worst flare ups, my weight fell to 85 lbs - I don't think I've publicly written the actual number online before. It was scary as hell, and an intense reminder of how damaging to a person's health being underweight can be. It puts you at risk for all kinds of severe side effects, even heart attacks. Extremely thin people are already teased and judged - weight extremes are weight extremes, and people tend to make all kinds of snap judgments no matter which end of the spectrum you may be at. But when I am repeatedly told, "I wish I had that problem", when I talk about struggling to gain weight, it is just another dismissal of the severity of my illness. No, no you don't wish for this. I was weak, sick, and scared, and that is nothing to aspire to. Not to mention how hard it is recovering from that kind of physical degredation. It's over 4 years later, and it's been an ongoing struggle to try and gain and maintain weight and strength.
Many people, women in particular, struggle with their body image - being comfortable and happy with how they look. But body image is rarely, if ever, discussed in the context of how a body functions. If I look okay does that mean I should feel okay? That I should function like a "normal" person? If I don't, what does that say about me? Shouldn't I just be able to tough it out? Push a little harder? Keep up? It doesn't look like there's anything wrong with me, maybe I'm making it all up or at least exaggerating.
It's hard not to end up angry at my body when there's no visible reason for its dysfunction. The types of chronic illnesses I have are all categorized as "invisible illness" - in constrast to more visible illnesses or disabilities where it's obvious to a stranger that there is something going on. I may limp a little or curl my body up when I'm in pain, but otherwise now that I've gained a bit of weight back, you wouldn't know looking at me that there was anything wrong. It's been a huge accomplishment for me to even stop thinking of my body as the enemy and separate from "me" (ie. my mind), thinking it's getting in my way, and ruining my life. This division of body and mind is a coping mechanism that only serves to keep up the facade that everything is fine, except for this pesky container I'm stuck in.
It's incredibly hard not to try and just push yourself to behave in ways that are more in line with how you look on the outside. It's an active effort every single day to be honest, not only with people don't "get it" (which may even be people who you're close to) but also, more importantly with yourself. (I talk about this in a lot more detail in Issue 2 of Collide zine, a compilation zine on the intersection of physical and mental health.) So many of the people I know dealing with chronic and/or mental illness are the biggest perfectionists, and the most driven people I know. Accomplished, incredibly smart, and struggling with deep denial about how unwell they truly are, which only serves to further push the limits of their capabilities rather than slow down and take care of themselves. I am a perfect example of this. Nobody ever suggested I slow down or stop to deal with how sick I was - to this day I wonder if it's because they didn't really believe that I was that sick. It was only once I crashed hard in 2012 and admitted to myself that I couldn't keep faking being "well enough" that I began to declare and protect my need for time to rest and heal.
Yet despite being sick, we ought to have just as much right to enjoy fashion, present ourselves nicely, want to wear our favourite dress/lipstick/sweater as anyone else. Illness does not preclude this - it's not a "you can't have it both ways" situation. In fact, don't we deserve to cheer ourselves up with these tokens of personal style, to retain our sense of self through how we present to the world? Shouldn't we be able to do that without it adding more weight, judgment, and shame onto what we're dealing with? Can't we be our whole selves, publicly, even though we may struggle on a daily basis because these circumstances we cannot control?
I looked back through many of the self-portraits I've taken of myself over the past couple years, which have been part of an exercise in developing my sense of self as a whole integrated person. I thought to myself, "Am I not all of these versions of me at once?" I am not only "sick me" or only "well me" on any given day. In many of these images, I look well or happy, even though I can specifically remember it being a day where I wasn't feeling well. Even on the best days, I live from moment to moment, never knowing when things will go downhill. It's my reality, and that of so many others, and it doesn't seem like such an outlandish idea just to treat ourselves and each other gently, since we can never really know.
As part of this post, I invited some friends to contribute their thoughts on these issues, and it was fascinating to hear what their experiences were...
One friend who has dealt with mental illness off and on (depression, anxiety, and PTSD), writes about how disconnected appearance can be from their level of wellbeing:
I dress my best when I'm feeling my worst. If I've ironed my outfit it means my inability to keep it together is at the uh-oh stage. Ironic isn't it? The better put together I look, the closer my mind probably is to unraveling, as if this compilation of fabric and buttons and belt is what's holding me together, an exoskeleton of sorts. My last defense against an imminent fall. Or maybe I just want to hang on to normal just. One. More. Day.
I remember a week-long stint in a psychiatric ward for being deemed a danger to myself. It was one of the most emotionally harrowing weeks of my life, but I was dressed so impeccably people were constantly mistaking me for staff, asking for directions or extra towels. To add icing on the cake, or perhaps insult to injury, my (now ex) husband added my "Life is Good" t-shirt to the mix when he delivered a change of clothes. And I wore it. I've never worn it since. Funny, I still have some of the clothes from that week and dislike wearing any of them now.
Another friend, Kelly Day, shared how multiple chronic illnesses, including chronic pelvic pain, have impacted her self esteem around sexuality, and her femininity. She writes:
Body image. Ah, that's a tough topic, and a very blanket term for something so intricate. I've struggled with it all my life. Ironically, because my illness effects what I can eat, I actually probably look better physically than I used to because I've lost weight, and eating natural, whole foods has made my skin and hair quite nice! Also, because I've come through tremendous trauma and become more validated in myself, I overall have better confidence. However...
What I struggle most with is my sexuality. Having pelvic disease, pain, dysfunction and 'women's issues' makes a person feel out of sorts, and not as worthy as other women. Sometimes I worry that it will be too much for a guy to handle. Sometimes I feel overall 'icky' because I remember, and my body remembers, the trauma my female parts have been through. Its been a nightmare. I'm missing organs. I hold tension in places most people wouldn't think of holding tension. Dozens of doctors and other medical professionals have seen my most intimate parts, and often they have inflicted great pain. I feel insecure often, and less desirable then women who have normal sex lives and don't have pain, and don't have to. In my past relationships, I would even go through painful intercourse just to please my partner so I didn't feel guilty. Or make sure that I was 'satisfying' him in some way so I felt like he wouldn't feel like he was missing something. Truly, truly messed up, and it has taken its toll, something I'm healing from to this day.
As for overall body image, its all connected...when someone tells me I'm beautiful when you feel like a mess, my first thought is "how sweet!" My second thought is "But I'm a mess. He must not mean it. Yuck." I also find I'm less prone to care about my looks, makeup doesn't happen anymore, and yoga pants are norm. I don't want to be a slob, but when you have more important things to worry about, looks just take a major back burner. I try to maintain a 'pretty au naturel look' but there is simply no extra time or energy for pampering...when I get bursts of energy I spend it doing something I enjoy, not trying to compete with beauty I likely can't attain anyway!
Its a constant struggle, and very up and down, depending on my mood. But overall, I guess I just keep trucking, I try to not compare myself, and I try to remember that this happened to me for a reason...my scars are battle wounds, my memories shape me, and my strength and resilience are my biggest assets.
We are all beautiful, and us sickies are beautiful at a depth that 'normal' healthy people can't always understand. And for that depth, if nothing else, I am thankful. Because external beauty fades, but the soul and spirit last a lifetime.
Finally, a friend who's an athlete and has struggled with depression, anxiety, and severe burnout writes about dealing with mental illness and body image, and the different ways they can manifest when you're very physically able:
I've never liked my body: it was too fat at 145lbs and at 127lbs. My stomach stuck out too much whether I was swimming four times a week or running 100km a week.
Along with my body, many days I also didn't like myself. Exercise, in particular, running, helped keep this at bay. After 10km...15km, in the mornings I would forget about my body and start remembering my strength. When I got anxious (which was quite a lot) or sad, very sad, running anchored my life and calmed my thoughts.
Then I got fast and lost weight. The thing was, no race was ever quite good enough and no weight was ever low enough. I was still one of the bigger runners, but my running peers were the top women in road races. They had no idea... The hardest was when I was hurting but running so well - not sleeping and barely eating - and all my running friends just complimented me on my times.
Nothing felt good enough, so I was only as good as my last race, and I felt like people only liked me because I was fast. I put tons of pressure on myself, but no matter what, I just still felt fat and slow.
I constantly compared myself to others and was terrified of gaining weight. Running stopped helping my anxiety and sadness, and started contributing to the stress - I feared workouts I used to love, cancelled runs with friends. Instead of being excited to explore new routes in the mountains on weekends, I would stay in bed until the last minute, and cry as I packed my gear. But I couldn't just stop.
Until finally, I did. I just couldn't get out of bed anymore, couldn't stop crying. Where I once ran for hours on end, I couldn't even muster energy to unload the dishwasher. I hated myself for not running, not wanting to run. It was the only way I knew to deal with the sadness - I felt myself sinking deeper and deeper.
Then I started running again - it was the only way I knew to get myself out of the depression. One month later, I had broken my foot - the body finally gave out.
It took me five months to get better. I gained weight and got my period for the first time in years. I went to counselling. I got pedicures. I travelled. I swam and did yoga. I treated myself so, so well because it was the only thing I could do. The depression didn't go away all at once, and it still circles back.
I'm running, now, and I get up before my alarm excited to see the sunrise from the mountains. I am just happy to have a body that's healthy and getting pain free. I don't know if I'll ever be as fast or as small as I was before, but I can finally be happy with myself, most days, and a lot more gentle.
Thanks everyone for trusting me with your stories and sharing them here.
Let's all strive to be kinder and gentler to ourselves, and leave our assumptions about other peoples' wellness and ability at the door, shall we? There is so much stigma and shame around not being a fully able-bodied high-functioning member of society, that I'm sure many more people you encounter have more going on below the surface than you know. And as for those you do know are struggling, remember they may regularly be hiding the severity of their illness to protect themselves and you from all the complex and awkward consequences that their honesty would bring.
If you have your own stories or comments about your experiences of beauty and body image in relation to chronic and/or mental illness, I would love for you to share them below. You are welcome to post anonymously (only I will see your email address) - just enter "Anonymous" or a pseudonym in the name field.