Reader Request: Body Gratitude in the Face of Illness

body image chronically ill

Reader G e-mailed me with this question:

What happens when your body has “betrayed” you by being ill? I really struggle with this. I often read that you should love your body for what it is able to DO rather than what it looks like (a sentiment that I agree with) but how can you do this if you are chronically unwell? I suspect that the answer lies in cultivating kindness towards oneself, whatever the situation, but it’s sooooo difficult.

I have no easy answers for this one. In fact, I’m not sure I have any answers at all. I spent most of my life being extremely, robustly, enviably healthy, but over the past few years I’ve dealt with some alarming and frustrating health scares, and been diagnosed with several incurable chronic ailments. And I’m angry. I’m angry that no one can help, that no one seems terribly interested in helping, that I’ve basically been told to suck it up and cope with these things that have diminished my overall quality of life, screwed with some of my most important relationships, and made me feel weak, damaged, and exhausted.

And none of what I’m dealing with is life-threatening, none of it impedes my social functioning. In fact, you’d never know I’m dealing with any health-related unless I told you. And if I’m this angry and frustrated, I can’t even begin to imagine how angry and frustrated those of you dealing with more invasive, painful, and life-altering illnesses must feel.

But without the will to cultivate gratitude, we may all lose sight of hope. And hope can sometimes make poor health easier to bear. Since illness can take infinite forms, it’ll be tough to generalize, but here are a few ideas for how to stay grateful for your body during times of sickness.

Define your own brand of pampering, and indulge

Illness can make hair and nails brittle, can make clothing uncomfortable, can make sunlight feel like daggers. But hopefully there are a few bits left unscathed. Focus on those, and pamper away. If your nails are sound and your hand steady, buy a rainbow of polishes and practice your manicure skills. If your hair is healthy and strong, do something fabulous with it: A daring cut, a new color, experiments with braids and updos. If you can deal with heat and water, splurge on delicious-smelling salts and schedule three baths per week. Facials, massages, professional makeovers … none of these things should be considered frivolous or wasteful if you’re in a battle with your body and just need something to make you feel happily human again.

Play with your senses

Try concocting your very own perfume … or just begin collecting scents that make you smile. Buy an enormous cashmere throw, and take it everywhere with you like a security blanket. Spend a week cooking only spicy foods. Then sweet, salty, tangy and so on until you’ve got a whole new group of fabulous recipes in your arsenal. Teach yourself to recognize morning birdsong, record the sounds of your partner or roommate or best friend sleeping, sign up for Pandora and start building your own radio station. Paint or draw or make collages, rent only movies that are visual feasts (Amelie, Akira Kurosawa’s Dreams, Marie Antoinette, Gone with the Wind, Across the Universe), rearrange your closet so that everything is grouped by color. Find a way to let your senses feast.

Focus on your strengths

This one may be a bit of a stretch – especially if your illness is debilitating across several areas of function – but it’s a practice that I believe ALL people can engage. Being sick means that you may not have full range of motion, your energy may be diminished, you may look different and feel strange or badly much of the time. But as tempting as it is to focus on those negatives, there are always things your body can still do, and do well. Can you still knit? Sing? Cook? Write kick-ass haiku? Debate with your dad or best friend? Even if you can’t bike to work or lift weights, can you still do pilates or yoga? Even if you can’t tolerate wool or linen on your skin, can you still wear supple silks? Do what you can to focus on your strengths, no matter how weakened you may feel.

Again, these may not work for everyone living with illness, and I acknowledge that gratitude can be hard to muster when you’re facing down a long haul. But hopefully some of these suggestions will help some of you.

Image courtesy Alex Proimos.

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  • Some of the most joyful people I have known were those terminally ill. There are some that get it…that life is about how we live it every day…to its fullest…not about how we look doing it. A woman with her bald head and huge smile reaching out to help others she knows are struggling with the same illness…another woman, quadrapelgic, who writes books, songs and paints with her teeth, and though life is tough, she wants to experience each moment of it. They have chosen to FOCUS on others and the life around them rather than on themselves. Oh, I am certain there are moments when they are alone and they grieve and hurt. But to the world outside all you see is joy and a determination to live out loud. That is style and it has nothing to do with the latest outfit!! It is a choice to live…. no matter the cards we have been dealt.

  • I just recently discovered your blog and find it really inspiring! This post especially is very, very important – not only for people who are ill in some way or another but as well for all those lucky others who are not.

    I have a chronical thyroid disorder (called Hashimoto disease – my immune system “thinks” that my thyroid is bad and has to be destroyed, so my thyroid is constantly deteriorating). For me it was pure luck that my doctor discovered it before I had any symptoms of my thyroid being underactive (key symptoms can be depression, putting on weight and fatigue). I have to take thyroid hormones for the rest of my life and get on well with that, have still no symptoms after two years.

    But what is really difficult for me is the fact that my body is turning against itself and I cannot just tell my immune system to stop that crap! Besides taking hormones, my life has not been affected by this illness but I had a very hard time to mentally cope with it. I still am afraid that my body could decide tomorrow that another organ is “evil” and turn against that for a change… so this post shows me how important it is to support and accept myself, even if my body does strange things sometimes!
    I’ll save this post to reread it when I need it. Thank you!

    Have a lovely Easter Monday
    blueberry

    (PS: I’m not an English native, so if my English is a bit strange, that’s the reason…)

  • Mistie

    When I was 16, my mother collapsed. By the time she was flown to a larger hospital, she was paralyzed from her mid-chest down. The doctors weren’t sure what was wrong with her. They told my dad that if the paralysis kept moving they weren’t sure what they could. We should prepare for the worst, and even if she didn’t die, she would never walk again. My mom is a living and kicking. Not only that, but she also works full time as a registered nurse. Her body still fights her. Whenever she gets tired, her legs tingle and she sometimes stumbles and falls. The most lasting damage was done to the nerves around her bladder, which has led to some embarrassing moments for her. I try to remind her just how many people are glad she is here, no matter what condition she is in. Her life is hard because of the lasting effects of her illness, but she handles it with beauty and humor. I think humor is probably one of the best ways to handle anything. The other thing that really helped my mom during recovery was her dog. My mom was so sick and tired of being in bed, and then, her therapy was extremely painful, but she always told me that coming home to her little Chihuahua who would lay with her in bed made it much easier. The dog didn’t care if she could walk, only that she was there. It helped her realize that her family meant it when we said that exact thing.

  • I’ve been getting migraines for about 15 years; they were chronic during at least three of those. Since I had debilitating pain every day, I quickly went into survival mode–doing only what I absolutely had to. I always found a supported rest really helpful for cultivating some gratitude–a bath followed by a cool washcloth and a nap gave me some glimpses into how good it can feel to be in this body, and that made a huge difference in my ability to cope with the present and hope for the future.

  • Valerie

    Just wanted to comment on the aspect of anger that usually comes with loss of health. It’s part of grief–sorrow over the loss of health, ability, physical attractiveness–and part of fear — being faced with one’s mortality. It’s like watching part of yourself die. Letting yourself grieve over these losses can be healing. Finding a good therapist can be a lifesaver. And yes, pamper, engage, enjoy yourself as much as possible.

  • Kimberly

    Not only should you pamper yourself, you should ask your friends to do the same! I see too many women who don’t ask for help when they’re sick, or who don’t take their friends up on offers to cook, clean or otherwise help out. I know that being sick can make you want to have some alone time, but it seems like women can also be reluctant to be a burden on others. When you really need the help, take it when it’s offered, and don’t be shy about asking for it!

  • I think the key is indeed flexibility and like you said, finding which of your capabilities you can still develop even with a hindering illness. Even as a healthy person, I think it’s important to develop different aspects of life – having both physical and mental hobbies for example, so that if your body is limited, you still have mental hobbies that challenge and expand your life.

    Another thing that can be very rewarding is finding ways to give. I think for a person with an illness, finding ways to contirbute to others can both cultivate self worth, provide a big emotional payback, develop social and caring skills, and also keep you in focus on things you can be thankful for, as in – true, I have this illness, but I can still help others.

    Lastly, Sal, I was very touched by the personal post you linked to, which I must have missed before. Being healthy for the most part, I am taking that post as a wake-up call for myself. Thank you!

  • This is something I struggle with a lot too. I never had a very good body image but I really lost control of things for a while when I was diagnosed with a chronic pain disorder a few years ago. I was just so very angry that my body couldn’t do simple things other people’s could.

    I had to learn how to appreciate what my body still can do, no matter how little. I deserve all the relief I can get. If I can still be mobile and active on a given day even if I still feel pain, I consider that a triumph instead of focusing on how I felt pain and therefor the day was a “lost cause”. I tell myself any little improvement I make is a worthwhile improvement I should appreciate and be proud of.

  • What a fantastic post. Depending on the illness, I think that making time for conscious movement is SO important. It’s meditative, it pulls out happy hormones and it reminds you that your body is more than the disorder it’s managing.

    My movement of choice for managing illness is yoga. Iyengar yoga particularly, works with props, very therapeutically as necessary, and at a variety of different levels of intensity, to promote balance, flexibility, strength and coordination. It makes one feel integrated – so much freer physically. And you don’t need to be able to actively back bend and do handstands to realize the benefits. You just need a great teacher and a willingness to make those body mind connections.

  • Kira

    Thank you so much for this post! I was diagnosed with rheumatoid arthritis at the ripe old age of 24, and besides the actual pain of the illness, the worst part of it is feeling so incredibly alone. While I have a great support system (my family and my SO are fantastically supportive and help me whenever I need it), there’s no one in my life that truly knows what it’s like not to be able to walk around the mall or play the guitar without pain. So this is a very welcome reminder that I’m not alone in this, and I greatly appreciate that. 🙂

    As for body gratitude, I try to tell my body “thank you” every day, even days when I have pain. So maybe I can’t lift my shoulders one day, but I can still get out of bed and go to work. That’s something to be thankful for, and my body gets me there. I’ve also learned to read my body better–I know when I need to break out the ice packs for sore limbs and which activities I can only do for a few minutes before I need breaks. I suppose those are the best pieces of advice I can give–be thankful for that which your body is capable (instead of being angry that you can’t do more) and learn to listen to your body when it is tired, sick, sore, or just needs attention.

    • Meg

      As someone who developed arthritis and Crohn’s disease at age 16, I know what you mean about feeling alone from your peers. It can feel very frustrating when it seems like no one really understands how much you’re hurting, both physically and emotionally. Since then, I have discovered that some of my friends had chronic illnesses of their own (severe nerve damage, depression), and being able to discuss those illnesses made me feel less isolated. Online support groups have also helped me.

      I also recommend listening to your body as Kira suggested, trying out whatever you think will help (whether it be a new doctor or specialist, massage, yoga, meditation, new diets, acupuncture, supplements, etc.), trying to reduce stress and exercise as much as you are able (I think both are great mental health boosters, and stress is a trigger for many illnesses besides), and having a good cry when you need it, then dusting yourself off and moving on with your day.

  • this post strikes a chord because i am a cancer survivor, and when i was sick, i had very strong feelings that my body had “betrayed” me and in turn, i owed it no pampering. i suspect this is not an irregular sensation for people with illnesses to have, but it was very difficult for me to overcome the feeling that my body and mind were at odds.
    one of the few things that helped me was doing visualizations–for me, i visualized a golden light streaming through my body and wiping away all the cancer cells, leaving me clear. it sounds a little bit hokey, but it was a calming way to feel like i could bring my mental energies and my physical body together–as if i could will my mind to make myself well. apparently, meditations like these can also have strong positive impacts on recovery, etc., so it gave me the sensation that my mind could cultivate strength in my body, which was working hard to dispel the illness.
    wishing the best to whoever wrote in about this; it must be a difficult time.

  • Thank you for writing such an inspiring post… thank you for the encouragement… sometimes we have to stop and learn to”pass it ON” to ourselves, illness can really mess with your emotions and self esteem…. so thank you for reminding us… when our body betrays us… we are still special..

  • Mar

    I can relate to the original poster. Up until two years ago, other than an accident as a kid, I have been strong, healthy, and very active physically. But then, two years ago, this all changed, leaving me right now with quite a list of serious acute illnesses I’ve gone through that have landed me in emergency rooms and hospitals, and countless weeks in bed. I too feel like my body betrayed me, and I am having hard time appreciating it – especially since a lot of my body appreciation was tied to what my body could *do*. I’m slowly adjusting my standards though. Instead of expecting my body to run a marathon on any weekend and giving it credit for it, I try to now give it credit for a walk, no matter how slow or short. I try to appreciate that it is right now able to get me out of bed and move around. I pamper it with rest, I try not to drive it hard like I used to. When I was acutely sick, I tried to appreciate it for giving me little moments of break in pain and letting me sleep. But it’s been a slow process – the accepting of new “standards” – that what I appreciate my body for is so much different at times now when I am acutely ill. And I am still at times so angry.

  • I’m infertile. I’m 38 years old, happily married, and infertile. I feel like my body betrayed me. I feel less … womanly, I guess. Less of a woman. I know this falls under the heading of “negative self-talk”, and I try not to indulge in body recrimination too often but when I look at the issue of my infertility directly, this is how I feel. That said, my husband loves my body! It gives him pleasure and it gives me pleasure. My family loves my hugs. My students love that my body still allows me to play on the floor with them. I love that my feet and my stamina will take me where I want to go. Yes, it can be difficult to look at my body and not feel disappointed. But I make sure those moments are brief and I try to immediately substitute the dark thoughts with thoughts of the ways that my body is fulfilling its purpose. And I try to be grateful for that.

  • Cathy

    Absolutely true. It’s not easy to stay vague to the many illnesses and physical challenges that impact individuals, you did a lovely job.

    My issue is infertility. With assistance I get pregnant easily and then my immune system recognizes the embryo and I lose it. My uterus and I are not always on speaking terms.

    I turn to activities that are more traditionally female dominated when I come out of a loss. It’s like part of me says, you know, I suck at doing what women are suppose to but I can bake bread, pretzels, pitas, bagels (there was a real yeast theme, something I was intimidated by), I can sew clothing for myself, I can make bath bombs and scented bath milks, I can make all kinds of things from scratch. It wasn’t intentional at first, and when I noticed the pattern, I wasn’t sure how I felt about it. Sometimes if it didn’t turn out, it was proof again I was a failure. Knowing the why behind the action helps me put it in perspective, keep my expectations realistic and focus on the positive feelings from tasty food, pretty clothing and lovely baths.

  • JB

    Great post, Sal. I too was super-healthy before developing a chronic pain condition several years ago. I think the hardest part for me is giving myself permission to be sick. I have this mindset that I need to try to keep doing things as “normally” as possible even though what my body is telling me is that it needs a break.
    I think in a way illness is an opportunity to really show your body that you love it. When I was healthy, I was constantly depriving my body of small pleasures (exercising instead of relaxing, dieting instead of indulging), but now I have a chance to really focus on what makes my body happy.
    Think about it. If your child, or your parent, or your significant other, or your pet were sick, you would show them more love, not less — right? So we should do the same for ourselves. Even if sometimes that’s easier said than done.

    • I’m the same way. I have such a hard time admitting that I’m sick, that I need a break. It all gets to be so exhausting.

  • I have some debilitating chronic illnesses. Things that interfere with a lot of pleasure in life, like sex and favorite foods and even exercise. But I can still paint. I love to paint. Sometimes I push myself too hard and end up suffering just to feel normal. If I overdo painting for an art show in order to get in just one more–I can often fall very ill as a result. I keep doing it, I don’t know why, but I want to live despite my problems, I don’t want them to hold me back.

  • Lobbyist

    I write down 20 things I am grateful for every day, and when I am feeling unhappy with my body I try to make 5 of them be about my body. At first it was super-hard but now its not hard to find 20 and it has made my outlook much more positive.

  • Emily

    Wow, did this post ever hit for me. I was chronically ill for the past 5 years – my symptoms are better than they were through diet – but I know the sofa looms again in the future.
    There are three things that I have realized. Chronic illness is often invisible – people look at me and they think they know what they see. Sometimes they think I am lazy, or fat, or a hypochondriac. What I have realized is that people who have never been seriously ill cannot understand what you are going through – even the people who love you. They look at you and they see someone who looks normal. They honestly just can’t understand. That’s not your fault.
    Second, being chronically ill necessarily shrinks your universe. I will never be able to backpack around the world the way I wanted to. But there are other, smaller, more unexpected universes where you can make a difference. In the worst days of my illness, I found myself online, talking to friends in other countries and time zones. They told me later that my emotional support for them made a positive difference in their lives – I WAS actually contributing to the universe. Now I make a point of writing letters and emails, and making phone calls when I am up to it to keep in touch with people – that is my contribution to the world.
    And finally, I adjusted my house to fit my needs (in small ways and with help) for the days when I am too sick to do much. My elderly neighbours know that my house is always open to them and they come in and make themselves a cup of tea and sit and talk to me on the days I am on the sofa all day. I thought it was all about me needing them – but it turns out they needed me, too.
    So those are the three things that helped me: It’s not my fault; giving back, but in smaller, more regular gestures, and adjusting my environment to fit my needs. I hope it helps.

  • This post really hit home. I was diagnosed with Crohn’s disease recently and it took me quite some time to learn to trust my body again. The tips you give here are spot on, though. It’s vital to take some time out to reconnect with your body after you’ve become ill. You can read my story about illness, listening to my body and mindful eating here: http://daviniahamilton.com/2011/02/10/why-i-am-a-mindful-eater/

  • What a moving post- I can relate to Reader G. For over 2 decades I’ve been suffering from symptoms of CFS, and while it is not life threatening, it is quality of life threatening, meaning, what would be a regular day for some, is like running a marathon for me, and requires days of rest and recovery. All of this, at least in the beginning of not knowing what was going on. I will admit, for years I felt betrayed by my body. Not sure when my perspective shifted, but I realize now it wasn’t my body that betrayed me, but perhaps through years of neglect, I had betrayed it. While warning symptoms came and went, I pressed on, pushing myself beyond my limit to be like everybody else, only to have created more exhaustion and poor health.

    While my life isn’t as active or full as I would like, I am grateful for what I do have- moments of clarity, moments of energy, and the fact my lungs and heart are in use, I am very, very grateful. Perhaps it was being at the deathbed of a close friend my age that opened up my eyes- there is no betrayal in living, only limits, and our creativity can help work around that.

  • I’m not really sure I can relate to the impulse to neglect or loathe your body once it “betrays” you by being ill; to me that should be a wake up call to take better care of it. Many illnesses can be mitigated quite effectively by acquiring some healthier habits: better diet, quitting smoking, regular exercise, reducing stress, plenty of sleep, etc. Stress in particular is a huge source of health problems, and yet for the most part it’s self-inflicted. I guess my point is that often times (not always, obviously) we are the ones betraying our bodies, not the other way around.

    Don’t think I’m implying that I lead some impeccably healthy lifestyle either; I know I ask a lot of my body and probably put it through more than it should reasonably have to deal with. And believe me, I fully appreciate its willingness to work with me most of the time. But when I get sick, or experience something like a massive headache or a pulled back, I generally blame myself and therefore my first impulse is to give my poor body a break.

    Whether you’re dealing with chronic illness or feel perfectly fine, it’s true that the better you treat your body the better it will treat you. And although you can’t solve every medical problem just by having a healthy lifestyle, you at least won’t be making it worse. And to me there’s also value in taking control of the things you CAN control.

    • Sal

      Hmmm. While I agree that some types of illness can be mitigated or soothed by better stewardship of our bodies and overall health, I’m talking more about chronic, long-term, and often genetic or out-of-our-control types of illness. Getting regular exercise and reducing stress are things that all of us should do all the time, no matter what … but they’re unlikely to reverse chronic back pain, or Crohn’s, or infertility. When illnesses descend – especially on those of us who have generally been in good health – it can feel scary, foreign, like an attack. And I think it’s natural to feel betrayed.

      In my case, I can say with confidence that I eat well, exercise regularly, get my sleep, don’t drink, smoke, or do drugs of any kind. And I STILL got sick. And dealt with several years of doctors testing the crap out of my body, scratching their heads, and eventually losing interest in my suffering. Do I still keep up my healthy habits, even now? I do. Do I feel angry that I am unable to do, eat, and experience everything I could five years ago? I do. And it’s nothing I did or didn’t do that caused those physical changes to happen.

      I do agree that identifying what you can control and committing yourself to caring for your ailing body will make dealing with any kind of body-related hardship a bit easier. But I think bodies can change in ways that we cannot alter or control, regardless of how well we care for those bodies.

      • That is very true Sal. I guess I was thinking more along the lines of things like migraines, ulcers, Chronic Fatigue Syndrome (which, to be fair, may in fact be caused by a virus) — things of nebulous origin that are exacerbated if not entirely caused by our modern lifestyles. I for one am sometimes guilty of forgetting to nurture my body, and it’s way easier to forget when I’m feeling well.

        • Audi, thankfully migraine research has finally revealed some answers, though it still has a long way to go, and migraine can no longer be considered a thing of nebulous origin. It is, in fact, a neurological disease for which, at the moment, there is no cure. The pain of a migraine is actually the endpoint of a series of cascading neurological events that happen up to days before one’s head actually begins to throb. Scans of a migraineur’s brain show that the brain activity during a migraine is frighteningly similar to a person experiencing an epileptic seizure. Because there are so many triggers, and those triggers differ for each person, and they are cumulative, it is difficult to predict exactly which ones in a day or a week will produce a migraine. Modern environmental factors certainly don’t help and, in fact, make things worse, but no matter how well I take care of myself and nurture my body, I cannot eradicate my migraines.

          • Beth, I hope you didn’t think that by ‘nebulous origin’ I meant to imply that such diseases are –very bad pun NOT intended – all in your head. Far from it. I meant that medical science has yet to assign a direct cause to conditions such as migraines, and unless you can really get at the root causes of these types of on-again-off-again chronic diseases, your chances of treating them effectively are diminished. As someone who works on developing drugs for chronic diseases, I can tell you that the ability even to correctly diagnose them remains imperfect, and the clinical trials for theoretically relevant therapies often yield frustratingly inconclusive results. Having worked on a number of these projects (mainly autoimmune diseases) it’s my belief that many of the current therapies are overly simplistic in their approach, and some still go after the symptoms and not the underlying causes. Sometimes we can get at the answers ourselves if we only listen to what our bodies are telling us.

            I’ll give you an example: a friend of mine suffered frequently from terrible, debilitating headaches and digestive problems that no doctor was able to diagnose. After months of carefully keeping track of everything she ate, she realized she was allergic to onions, garlic, and everything in that family. And believe me, that class of vegetables appears in things you never even imagined, sometimes far down in the list of ingredients such that most people would never consider it as a possibility, let alone notice the pattern. What doctor would have even asked the right questions in her case?

            In modern society we (as a society) eat a high proportion of dairy, when in fact many people are lactose intolerant; we also eat a wide variety of things we might in fact be allergic to. Preservatives in prepared foods, chemicals we’re exposed to, and other environmental factors might also play a role. So it isn’t just ‘eat your veggies and you’ll feel better’ — it’s about examining all of your habits, from how much sleep you get to exactly what you eat and when, to how much time you spend staring at a computer screen or sitting stationary. Sometimes there may be patterns there that I guarantee will not reveal themselves to any doctor or diagnostic test. A healthy lifestyle for one person may in fact look very, very different to another. Anyhow I didn’t mean to ramble off on this long a tangent, but even as someone in the industry I feel that Western medicine often overlooks the subtleties of disease, and also that we tend to get distracted by daily life and perhaps miss the signals our bodies are sending us.

            Sorry to clog up your comments section with so much text, Sal. I don’t get to nerd out on science-related topics very often on fashion blogs. 🙂

          • Georgina

            Hi Audi,

            Please bear with me as the thoughts that I’m trying to untangle don’t fit into a short format answer that neatly…

            When I first wrote to Sal and asked for her thoughts on body image for the unwell I wasn’t even quite sure *why* I was asking her – as you say it’s an unusual topic for a style blog to cover. I now realise that it is because (in my eyes) Sal is expert at cultivating and communicating the notion of constructive acceptance. I have learnt an incalculable amount about fostering self-esteem from her writing, particularly her inclusive attitude to what makes ‘a real woman’. I had gratefully absorbed Sal’s message that slim women are as valid as curvy women who are as valid as…(etc) BUT in the same way that I had become troubled by the persistent drumbeat of ‘real women have curves’ (not here, obviously!) I was beginning to have the same feeling of exclusion from the ‘love your body for what it can do not what it looks like’ mantra. It may be worth noting that it wasn’t any single statement or event that prompted me to write to Sal and that (in general) I think that it IS sensible to appreciate what your body can do rather than what it looks like, but I was looking for a counter-message…What if you are no longer able to ground your identity in what you ‘do’? What if you are unable to assume a longed for identity? What if you can only leave the house once a week? Once a month? What if people can’t *see* your illness? What if you’ve been ill for X years and there is no sign that it will improve? Illness tends to come as an abrupt shock – a complete reversal of fortune. It can shatter your self-esteem. It strains all of your significant relationships. It can cause sorrow to those that you love because they can’t fix things for you, guilt that you aren’t able to be reliable or contribute in the way that you would like, a sense of failure if you can’t make yourself well. It disrupts ambitions and I’m not sure that you ever truly get used to it. It forces you to experience the darker emotions – loss, anger, grief – at the same time as requiring you to be your ‘best’, most positive self. It demands a complex web of often contradictory responses – defiance, compromise, hope, determination, patience and even (gracious) defeat at times. It makes you work hard for each shred of positivity that you can spark into life. It’s true that a period of illness can increase your sense of compassion, it can enable you to find meaning in your life, it makes most people profoundly grateful for the blessings that they do have and you learn to never ever take you health and energy levels for granted. Sadly it also gets old – I’ve learnt these lessons! I’d like my life back now please! (Ha!)

            In truth I didn’t expect an answer but Sal was game enough to tackle the subject and it seems like there are a lot of other readers struggling with this issue one way or another. I suspect that many of the people that have left their stories are reading Already Pretty in the same spirit that I am – finding encouragement to do the best with what we have and foster a positive sense of self, whatever the circumstances. The idea of self-care is complex and you are absolutely right to point to fundamental lifestyle adjustments such as a good diet, appropriate exercise, awareness of chemicals in our environments etc etc. I think that my howl of body ‘betrayal’ was because I HAVE been through my life with a fine tooth comb and I’m left with an illness that won’t shift, however ‘good’ my attitude and lifestyle are. (Apologies for the over-use of inverted commas but these are fuzzy concepts). I think that a great number of the other readers that have shared their stories will also have been through this process of hopeful adjustments, as well as repeated visits to Doctors and specialists and so on. I guess I was interested in what you can do when you feel you’ve exhausted all these avenues and you need a pick-me-up or another bow to your set of coping strategies just to get you through the inevitable frustrations and out-and-out pain that hits now and again.

            Whether people are dealing with an acute illness or a chronic illness it is sometimes difficult to remember to make self-nuturing gestures and maybe this is where the second overlap with a style blog comes in? Is it even worth making an effort with your appearance when so much else is wrong? More worryingly, do you deserve to make these gestures of self-care? (Yes!) Illness can shake your identity but I do believe there are seemingly small acts/choices that can help keep you going. I have fabulous pyjamas & dressing gowns. I have a collection of brightly coloured, wonderfully soft silk dresses & camis. I scour eBay for new-to-me cashmere cardis. I know how to apply a few smudges of make up to look (and feel) more human. I don’t style my hair & can’t shower every day, but I accept that. When I can I make my own cleansing balms and moisturiser. I have an on-going “I feel better if…” list (treating myself as an experiment!) Sometimes the energy isn’t there, sometimes the spirit fails and sometimes the illness confines you to bed and you just have to hope you’ll have a better day tomorrow. Then it’s a case of constructive acceptance, permission to feel that it’s ‘too much’ now and again, learning to ask for (and accept) help and use every tactic available to foster tiny sparks of hope, positivity and joy whenever you can.

            Oh my goodness Audi, I hope that this makes some sense? You’re a star if you’ve read this far! Best wishes to you. G xx

    • Mar

      Audi, I too agree with your general thesis – that healthy lifestyle gives us the best chances of leading healthy lives, and if we push our bodies to extreme, they will push back – but from my reading of the responses here it seems that most people talk about serious (chronic) illnesses, not three days with the flu, and how they relate to their bodies because of that. When I lift heavy boxes around all day and then pull my back, yes, everyone will agree I need to give my poor body a break. Or if I stay up all night stressing about a meeting and then come down with an extreme headache – yes, it’s time to relax and try to stop stressing. I’ll be better in a day, week tops. It’s quite a different thing when suddenly out of the blue, your body develops a chronic condition, or stops acting “normal” – be it one’s immune system attacking parts of your own body, be it your airways constricting in a severe asthma attack, etc. I resent and take offense by the suggestion that someone with a serious chronic illness should just stop stressing out and eat their veggies, and it will all work out, or that they almost “brought it upon themselves”.

      • Audi, I’ve been debating whether to reply to your last comment to me since last night. I thought about just letting it go, but I can’t, especially after reading Georgina’s comment above, which touches on so many of the relevant issues that she, in her initial letter to Sal, and other commenters have brought up. I found your statement, “Sometimes we can get at the answers ourselves if we only listen to what our bodies are telling us” incredibly facile and demeaning. Like Georgina, I have been through my habits and my diet — in fact, pretty much everything in my life — with a fine tooth comb. You don’t know me, and what’s more, that’s a terribly generalizing statement coming from a scientist. You’re also NOT a clinician, nor do you seem to have experience in migraine research. Therefore, your “nerding out” is not terribly useful in this discussion.

    • Anon

      Dear Audi,

      Your comments don’t upset me, because I must assume you just don’t understand what chronic illness UNRELATED to lifestyle is like to go through. I certainly didn’t before I had one. fyi I don’t drink or smoke, I am thin, eat well, exercise, do yoga, etc. I got poisoned with a neurotoxin called ciguatera from food (that you can’t detect to prevent it) that has made my health and life challenging in ways I never imagined. There is no cure. There is no ‘lifestyle’ change that will get it out of me. There IS pain, mystery, fear, frustration. You don’t likely realize this, but your comments are pretty tough to read for those of us in this type of situation. I’ve had a few people say to me “it’s probably caused by stress” and I seriously almost hit them when I hear this. The only thing I am stressed about is the health challenges I have. I understand your points, but please know that they *feel* condescending to those of us who not only have a burden to bear not by any wrongdoing, but HAVE tried every healthy lifestyle thing already. The lecture is far behind the curve of where those of us with chronic conditions mostly are. I assume that you mean well and I truly hope you and no one close to you experience a chronic illness of the sort the rest of us are dialoguing about. I wouldn’t wish understanding this through experience on anyone. I sense that it is nearly impossible for those without direct experience to ‘get’ it- my spouse tries his hardest and is amazing, but there is a big gap even in living with it in your body and living next to it.

      Sal, I really appreciate you sharing, and all the other commenters with illness. Reading this is the first time that I haven’t felt isolated in a long time in this regard, and seeing that others have similar problems, emotions and reactions is validating and comforting. Thank you.

      • Mar, Anon., Georgina and Beth:

        Thank you for saying everything I wanted to say to Audi, only so much better than I ever could. I have several chronic illnesses, including psoriasis and psoriatic arthritis—which are “nebulous,” to use her word, but almost certainly at least partly genetic—and though altering my diet and proper self-care techniques can make me feel better relative to my worst, they certainly don’t make me healthy again. I was fairly young when I hit with the symptoms from my diseases—13/14 and 21, respectively—and it wasn’t the result of not eating well or not sleeping properly. That is offensive, and I’ve rambled on much longer than I meant, but what Audi said is indicative of the prejudices and misinformation that those of us with invisible and visible illnesses fight against every day. I didn’t do anything to deserve this. Neither did anyone else.

  • Erin

    This is far more superficial than the other posts, but I thought I would share my perspective (although I’ve have to deal with acceptance and body issues as well – significant stuff). This post was perfect for me today since I just got home from finally finding shoes for a black tie event after many, many days of searching. I can only wear flat shoes or boots that fit orthotic inserts due to birth defects in my feet and legs. It is difficult, however, I am thankful for so much. Growing up with leg braces and other such things certainly shaped me (inside & out!), but sometimes I do get frustrated that I can’t just go into DSW and have fun. Other days it is no big deal because I have my fives senses and so much more. So, IF you see a young woman with weird chunky shoes that don’t look ‘just right’ with an outfit….well….I’ll speak for those “Feet-Impaired” fashion lovers….we try. Look us in the eye! After all, clothes and stuff, they are expressions of who we are, but do not tell the whole story.

  • Georgina

    I just wanted to say a heartfelt thank you to everyone that has taken the time to leave a comment. I’m touched by both Sal’s sensitively written post and the replies that have been left – I don’t feel alone with my illness today and that is a great gift. Thank you all for such compassionate, thoughtful responses and for sharing often hard won wisdom. There is more that I’d like to say but I need to think it through first and really I just wanted to show my appreciation and let people know that their words have reached me and that I’m quite astonished (and heartened) by their kindness.

  • Grace

    Now it is 4:30 in the morning. I woke up 2 hours ago because of severe pain all over my body. I needed a strong painkiller but it took time for me to get the pill because I could not move. I have been ill for years for various kind of diseases including brain surgery and autoimmune disorders. Chronic diseases harms one’s mental health as well. You never know how miserable you can be when you have chronic illness. I am glad that I read this just in the middle of my pain. I was thinking about how I can survive today with this pain. This is a great post for the people like me. As I am struggling with weight problems, losses and gains, I have clothes in several sizes. You cannot build every outfit for your varying body sizes, and this is frustrating for me, which is more so when you have a job asking to dress rather formally.

    What I have found helpful is using accessaries. Necklaces and earings are common, as you know. I use various kinds of brooches and pins. I even enjoyed wigs after the brain surgery. I could not have afforded a wig if I had not been sick.

    My tip, if I can say it is a tip, is this; do not wait for the perfectly healthy time. You may or may not be free from your illness. You have to live your life even when you are not well.

  • Lynn

    Sal,

    I agree with you. I spent three years of testing only to find out that there is nothing doctors can do for me except give me painkillers, and only one of them was actually interested enough to really try to find a diagnosis. My illness is not obvious to anyone, but it restricts what I can do to a great extent. I do take care of myself, and I am grateful for the things I can do, but I still feel angry and frustrated sometimes. I don’t feel bad about that — some resistance to fate is not a terrible thing!

  • Ann

    I can so relate to this post and really appreciate all of the comments as well. I am a cancer survivor for 16 years and am also recovering from a bad injury nearly 3 years ago that left me with some nerve damage in one of my legs. I can still walk normally, but cannot run or jump or skip and have been advised to avoid most exercise except for walking and a stationary bike. For many years intense exercise had been my remedy for just about everything, and it has been just devastating to me to feel so limited. I just wanted to share one small comment that I discovered was true for me. There is a difference between the kind of gentle pampering that Sal recommends (good) and the intense, angry self-care that I found myself engaging in. In trying to take care of my body during my struggles, what I was really trying to do was control the illness and cure myself. I know that there are things one can do in this regard, but I was going crazy. I wasn’t just relaxing in a hot bath, I was taking a detoxifying herbal bath. Every food that went in my mouth was in the hopes of a cure, every step I took I was thinking about whether it would heal my body. When I learned to let go a little it helped.

  • I just recently found your blog, Sal, and I’ve spent quite a bit of time going through your archives. Part of my motivation for doing so was because of my own chronic illness. I’ve been diagnosed with Intractable Migraine, which basically means I have a migraine or symptoms of migraine all of the time. On top of the pain, I have the side-effects of a frightening amount of medication to deal with.

    The connection to digging through your archives? I can feel myself slipping too far into the gloomy dark space, and I wanted to find some ways to spice up my wardrobe — even if just a little bit — as part of my ongoing effort to keep myself “ongoing.” I work at home as a writer, which gives me something of a pass as far as wardrobe and looking nice are concerned but that doesn’t do anything to help me feel better about myself and, frankly, often makes me feel like more of an invalid than I already do. Some days, taking a shower is a challenge, but I’m trying to impose a bit more structure on myself like showering and dressing a little nicer, say, on Mondays, Wednesdays, and Fridays. I think I got that from you or Audi in one of your posts about working from home. That may not work for Reader G, who may be too ill for that, but your suggestions were really good. For me, focusing on my strengths helps a great deal. Self-care is really also key, as is being grateful for what I can do, and for being grateful for what I’ve gotten done. I’ve had migraines since I was 12, and I’m now 48, though they were never as bad as they have been for the last 7 or so years, but I’m not angry at my body, at least not anymore. I still get situationally angry about my migraines from time to time — I am human, after all. But it’s not because I believe that my body has done something wrong. I believe that viewing one’s body as the enemy actually makes one sicker, though I don’t mean to diminish *at all* how hard it is to change one’s perspective. Thanks for addressing this important topic, Sal. I’m really, really glad I found your blog.

  • I think for me, it’s hardest(personally) when there is something wrong that other people can’t see. We don’t always want to announce our illness, disability or quirks. But sometimes we want to explain or commiserate and feel out of place doing so.

    I think trying to focus on the things you are capable of right now are important. I think being intentionally indulgent is important to me. No, I don’t mean eating a whole cake or getting a massage 7 days a week… but slowing down and taking extra time to make my homemade meals visually pleasing, as well as palatable. To dress up, even when I know I’m embarking on a 14 hour research paper day. To languish in a warm bath before bed, even if I did shower in the morning. To sit outside in the warm sun and read. To have lengthy discussions with friends about nothing.

    I know that illness can make it hard to even enjoy things you normally do, due to disinterest, fatigue, etc. My motto has become “Just do it”. I find “laziness” only exacerbates my problems, but when I do my regular chores, complete my normal habits, cook, and do my homework early, I get into a refreshing routine that leaves me energized instead of exhausted, or at least tired and accomplished. This won’t work for everyone, but it’s what I do that works for me.

  • I struggled with this through a long, dark period of chemo. And I would like to add one thing to your list, if you’ll permit…

    One thing I noticed about a long illness is that it can make you very microcosmic. Microcosmal? I don’t know the right word. But you are forced to focus on yourself health-wise and that can seep into all aspects of your being, and can lead into a spiral of self-pity. It’s hard to avoid.

    So while I agree with your thoughts on self-focus, I would add that – if possible – find a way to focus on someone or something outside of yourself. A cause, a person, whatever. Giving to something outside of yourself (no matter in how small a way, even if it’s just emailing to counsel someone in a similar situation) helped me to feel stronger, and more normal, and somehow BIGGER than my illness. And now that my illness is over, I have found a way to continue that type of giving, which helps so much.

    I hope that makes sense.

  • b.

    Thank you for this post, Sal, and for all of you lovely ladies who’ve shared your thoughts. I, too, have an “invisible” chronic illness, and empathize with much of what I’ve read here.

    One other point I think it’s important to mention–sometimes I have to give myself permission to NOT love my body. Some days, it just pisses me off. Some days, I escape into a book so that I don’t have to acknowledge that I hurt, or don’t have the energy to do whatever it is I should be doing.

    Sal, I remember you writing another time about how you used to see your body as a vessel for carrying around your brain, which was your “real self.” That rang so true for me! Having been born with my conditions (and since I was much, much sicker as a kid than I am now), my body often felt like a hostile environment. It took me a lot of years of therapy, yoga, and actor training to realize that I am both my brain and my quirky, imperfect, lovable, sometimes very, very painful physical self.

    Today I know that I am both. But I have learned to value that ability to live more in my mind than in my body, as an occasional coping mechanism for the really bad days. Somehow, giving myself permission not to try so hard for a little while makes it that much easier to appreciate my body the rest of the time. Because mostly, it’s an awesome place to live. 🙂

  • Beth and Grace: Just want to let you know I’m reading all of these amazing comments and my heart goes out to you both – to everyone here with chronic pain, of course. I have had migraines (just occasionally) and I know how debilitating they are for just a few hours – never mind constantly. And Grace – please stay strong! I don’t know the details of your illness but I know that yoga can be so helpful in managing pain. Don’t think of the “regular” classes – which may not be appropriate for someone with debilitating chronic illness. I mean therapeutic classes (a bit harder to find in small centres) which deal one on one or in small groups with people working with certain constant challenges. xoxo

    • Grace

      Thank you for your kind regards and suggestions. I tried Yoga but just as you said they have just refular classes. If I want a therapeutic one I should pay for the whole session. I think I am doing alright as a working mom. By the way, I like knitting and crocheting. I love the sweater in this post. I learned knitting and crocheting from my mother, who was a great self educated knitter. She could knit or crochet what she saw.
      I will drop by your site to see all the outfits and other materials. Thanks again.

      • Thanks for your kind words and support, K-Line. So interesting in a wrinkle in the universe kind of a way about your mention of therapeutic yoga — I used to do “regular” yoga years ago and found it to be such a wonderful part of my life. Unfortunately, as my migraines got worse, the “altitude” changes of my head made it too difficult to continue. I just recently began a Svaroopa yoga class, which is so supportive — all poses are done with props and blankets — and gentle and healing, and it is simply awesome. There are few standing poses; most are done on the floor or on a chair. I highly recommend it.

  • Maggie da Geek

    I have severe asthma — I take about a zillion pills plus inhalers and a nebulizer all the time, that’s when I am not “sick.” But it is under good control and I can usually do whatever I want, except of course for perfume and hairspray, and smoke and dust and too many cleaning products. (You get the idea)

    What has been most helpful to me was counseling, where I whined and complained to the counselor about how unfair it all was and how much of a pain it was to deal with. And why did I have to cope all the time.

    Nobody else wants to hear all that. Maybe once, but if you have a chronic disease it’s as much of a pain to you after 1 year or 2 or 10. And no one, no matter how supportive, wants to hear you whine that much. (And I really don’t like to hear myself whine either.)

    But the resentment over having to do all this stuff that no one else has to do actually got in the way of taking care of myself. (Reminding myself that other people had it worse did not help at all.)

    So I paid someone to listen. It really helped. I realized that I was resentful and that I did think it wasn’t fair — and that thinking that way was perfectly understandable. Once I admitted (whined a lot) that I was unhappy about all the changes I had to make. I could deal with making them a lot better.

    Maggie da Geek

  • Rachel K

    Sal, I didn’t check my Reader yesterday and this post was sitting near the top when I logged in this morning. How timely. Last month my husband was diagnosed with a life-threatening disease. His liver will slowly by destroyed by this disease and the treatment is almost worse than the disease symptoms. We are at a complete loss. He is withdrawing from me, from everything he enjoys, from life. He is angry and disillusioned. It doesn’t help that he’s been out of work since September, struggling to find gainful employment while we suffer financially. Now this. With no insurance there is very little hope of treatment. In one afternoon our lives have been turned upside down. He is pushing to end our marriage instead of putting me through this nightmare. I simply don’t know how to keep things together anymore. I’m not starting the blog that I emailed you about a month or so ago, life has just taken a different direction. Any advice anyone out there has for supporting a terminally ill loved one would really be appreciated. I just don’t know what to do…..

  • Molly

    Another chronic illness here. I’ve seen a lot of improvement, but I noticed that over the course of my illness, one major sacrifice was the link between my mind and body. My mind felt like “me,” while my body was troubled and frustrating, speaking a language I didn’t understand so I never knew what it wanted me to do. In therapy I realized that this whole time I’d been angry at my body for causing my mind pain when I could have been compassionate–my body (also “me”) was hurting too! Now when it hurts, I close my eyes, focus on the area(s) that hurt, and talk to my body silently: “Oh, poor you! Well, we’ll deal with it together–mind and body.” It still hurts, but without the additional hurt of being blamed for its own suffering.

  • Heather

    Sal, this post couldn’t be more timely. I’m just coming out of a fog of mourning after a doctors appointment on Monday that has my hubsnad and I upset. It’s not life threatening, or once I get a handle on it even socially an issue. but I need to remember to love my body despite it’s flaws, and how scared and sad I am right now.
    Thanks,
    Heather

  • Hope

    I would really suggest the book “Full Catastrophe Living” by Jon Kabat-Zinn. He is/was the director of the Mindfulness Based Stress Reduction Clinic at the University of Massachusetts. The program outlined in the book is for people of all types who have chronic pain and illnesses. I have started using the program to help with several of my chronic issues (mine happen to be mostly stress related, but many of the patients described in the book are there for cancer, heart problems, etc) and I have found that as I try to be more mindful in general, my ability to self-love has been growing. I used to hate everything about my body, to not want to “dress up”, think I wasn’t really worth spending time and money on. Now I am learning to better take care of myself.

    I know this sounds like a testimonial, and I guess it is, but the book and MBSR program really are that good.

  • H

    I’m a 20 year old who has been struggling with this very issue for a while now. Sometimes I feel as if my body is a stranger, as if I’m a separate person trapped within it. As silly as it seems, I’m hurt. I feel like a close friend has turned her back on me, betrayed me, and is doing all she can to ruin my life.

    However, and I apologise for the cheese, the pain I’ve experienced has taught me to be enormously grateful for days when my body allows me to act like any other college student and go to class or hang out with friends or even dance! Although obviously there’s a lot of frustration, I have developed an incredible appreciation for the ‘normal.’

    I’m blessed to be surrounded by wonderfully supportive friends and family, but don’t feel comfortable sharing thoughts/issues such as this with them. Thank you so much for this post, Sal. And thank you also to those that have responded with their stories and suggestions– you’ve taught me a lot. It helps so much to know that there are others out there dealing with and working on the same issue! Sending you all love!

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