Tag Archives: coping

The Hard Stuff.

Rusty Hoe over at Living with Bob posted this today, about the benefits of being honest regarding the hard parts of chronic illness. While wallowing isn’t terribly helpful, reaching out for help in the inevitable dark places that come with chronic health conditions is a valuable way of establishing social support, which can mitigate the experience of pain and distress associated with illness.

I know this very well (very! It’s the underlying topic of my thesis!) but still fail frequently to walk the walk. I’ve been avoiding this little space because of a horrible flare, which has left me intermittently screaming aloud (hadn’t done that in a while and didn’t miss it), crying on public transport, and mentally way, way down in the dumps. I thought that because I was feeling bad, I had nothing worth sharing and should keep my thoughts to myself. The Living with Bob post reminded me today that that isn’t necessarily so.

I can be honest and say I’m struggling, and that it’s okay. I can hope that if you’re struggling too, you can take some comfort knowing you’re not alone, and that you don’t have to always pretend everything is perfect for fear of being a downer. I can say that acknowledgement of your struggle, from others and from yourself, is incredibly important to wellbeing in chronic pain and illness. I can say that I’m sorry that we live in a society where asking for help is often construed as weakness. I can say that just by virtue of continuing to put one foot in front of the other and endure, you are showing incredible fortitude, bravery, and strength, whether you can see it or not.

I can remember that even when I do everything right in terms of self care and treatment, sometimes I will have flares anyway, and that they don’t mean I’ve screwed up or let anyone down. I can remind myself that even where I have slipped up and not taken care of myself as well as I could have, that doesn’t mean that I’ve brought this on myself and deserve to be punished.

I can remember that I’ve gotten through every rough patch so far, and that I’ll get through this one too. And you will too, whenever your next flare arrives. We just have to wait it out.

Brain Fog & the Blahs.

So the post title might sound like an unappealing band, but that’s the state of things at the moment, I’m afraid. Nothing big and horrible, just a whole bunch of small irritations and disappointments compounding to make me feel generally – ugh.

I applied for a job, which was huge for me; I’ve been talking myself out of it for so long that summoning the courage to actually apply took a lot. I sorted referees (terrifying! I hate asking people to vouch for me), bought interview-appropriate clothes (I’ve lost 16kg and all my tailored stuff now looks ridiculous) and updated my resume (a.k.a. engaged in a brief exercise of ‘let’s look at all the ways in which I have failed’). I didn’t hear back, so I’ve been doom-and-glooming about that, even though I rationally know that at least now I’m prepared for the next thing that comes along. I also was recommended for a position a friend is vacating, and was assured that I wouldn’t need to interview or anything, I’d just get it, and haven’t heard back about that either. I feel like, hey, you don’t even know how crap I am yet! Och well.

I’ve just switched to the slow-release of oxycodone, after being on fast-release for a couple of years. The latter worked well, but makes me hyperactive, so at night-time I’d have to choose between sleeping in the next three hours or pain relief. It also wore off too quickly to get by with one dose during uni days when out for several hours at a time, and the facial-but-especially-my-nose itching which has been a constant side-effect for me had worsened to the point of being unbearable lately.

So, I asked for slow-release, and on all those counts it is better – but the pain relief is less effective. And pain relief is kind of the most important thing when it comes to pain medication, right? I’ve been waking through the night feeling like the muscles in my back around my facet joint are burning (new and exciting pain symptoms, yay!), and my gait is worse because I can’t force my leg through the swing as I take a step in the way I need to. And because I am eternally terrified of seeming like a junkie, I will have to put up with it for a month until this script runs out.

Worse, I’m going on a date with my partner tonight, and have been looking forward to it, and now sitting through dinner and a movie is looming, horrible and insurmountable. I am determined not to (for the umpteenth time) get halfway through dinner and have to go home because my back hurts, but I also get really surly and curt when I have to work through pain. Not the best setting for an enjoyable romantic evening.

And last but most importantly for me, oh god the brain fog. It’s been particularly malicious for the past week or so. I’m trying to finalise a research proposal and rewrite then incorporate some theoretical content into a literature review, both of which are fairly highly demanding cognitive tasks (at least for me). My usual coping method during particularly bad bouts is to put the hard stuff on hold and do mindless busywork tasks, but my deadlines are looming and it needs to get done. It’s like mentally walking through very deep mud trying to have ordinary conversations (I felt like the world’s biggest moron in my last supervisor meeting), let alone produce fluent academic writing. It’s massively frustrating to be sitting there, knowing I know the perfect word to describe a complex concept and yet not for the life of me being able to retrieve it.

So, after all that whining, in an attempt to be constructive; help! How do you manage brain fog when you have to work through it? Any strategies that might help? I’m open to anything!

A Chronic Pain Primer – Part Two.

So you’ve got chronic pain. Now what? How do you go about getting your life back?

Treatment is possible. Its quality varies widely, unfortunately, but there are a lot of things that have been shown to be helpful, and a lot of other things which generally aren’t. Systematic reviews and meta-analyses of randomised controlled trials are generally the best place to start looking for evidence-based treatment, and there are a few available now that give us an idea of what will be helpful for most people.

Keep in mind though that, as always, research identifies what is helpful for the majority of people or the average person. There are outliers (people who don’t respond to treatments in the typical way) and you might be one of them. Individual differences are important. Use research recommendations regarding effectiveness as your starting point, to help you identify what will likely be the best investment of your resources. But, if you’ve exhausted all the best options and want to try second-best, or if you’re already doing something that doesn’t have great research support but is helpful for you, and is not causing you harm, which includes undue financial burden, stick with it. Do what works for you – but always check with your treating physician/s to make sure a specific treatment option is appropriate for you.

The best recommended course for pain management once it becomes chronic is multidisciplinary, intensive treatment involving a biopsychosocial approach and functional restoration. What does that all mean? A biopsychosocial approach to pain management essentially just requires that any treatment addresses physical, psychological, and social aspects of pain, because these are involved in every pain experience. All chronic pain management should incorporate this perspective (it’s been supported for forty years now), but not all of it does.

Physical aspects may be issues with tissue damage, or central sensitisation (your body’s alarm system continues going off in the absence of or disproportionately to damage).

Psychological aspects do not mean you are crazy if you have chronic pain. Some medical professionals take this stance, and they are ill-informed (and not doing their job properly). Everything we experience through any of our senses is interpreted by our brain, and thus influenced by our beliefs, thoughts, expectations, and previous experiences. Chronic pain is no different.

Social aspects can exacerbate or maintain pain. Things like loss of employment lead to financial difficulties, which limit treatment options and tend to be associated with less healthy lifestyle and dietary choices, and stress, which increases your body’s pain response. Social support and relationships are hugely important, as supportive relationships can protect against and reduce pain and distress. Interactions with health professionals also count as social aspects of pain, and I’m sure a lot of my fellow pain patients can agree that the health system can be a pain in itself!

Just as you need a doctor (and maybe a physiotherapist or exercise physiologist) to address physiological issues, you need someone in your team to help with the psychological and social side of pain to effectively manage it. Coping with chronic pain is hard! Help navigating it can make your life easier, even when the pain can’t be cured. Your GP (and maybe your pain specialist) won’t necessarily have the time, expertise, or inclination to help you with psychological or social issues. This is why multidisciplinary care is important – it’s recommended that individuals with chronic pain see at least a GP, psychologist, and physiotherapist, and if you have access to them, social workers and occupational therapists can be hugely helpful too.

Multidisciplinary pain clinics or centres tend to be the best way to get integrated care from several practitioners, but they vary in geographic and financial availability, and they often have long waiting lists. If you are seeing individual practitioners, it will likely be up to you to make sure they’re talking to each other. Keeping notes at appointments and asking that follow-up letters be given to you or sent to the other people managing your care can help keep everyone on the same page.

Intensive treatment means what you would expect – this is not an overnight fix. A lot of programs range from 6 – 10 weeks or so, so expect to invest a couple of months. As a caveat, not all health professionals are created equal, and just because you have a pain management team doesn’t mean they will be perfect for you. Health professionals are flawed human beings! Advocate for yourself if something goes wrong and find a new professional if necessary and possible.

Functional restoration means that your chronic pain management program should be aiming to help you get back function even where pain is still present. Bed rest and eternal avoidance of painful activities are not a treatment for chronic pain. They will lead to deterioration and further loss of function over time. If you have identified physical damage or abnormalities and your doctor has recommended avoiding a specific activity then listen, obviously. Since my back surgery, I am forbidden from skydiving, bungee jumping, contact sports, and the elliptical machine at the gym – all things I can live with 🙂 But around those restrictions, I am as active as possible, and have ridden horses, gone caving, and at least attempted everything else I used to or need to do. I take more frequent breaks while sitting, but I still sit down.

A physiotherapist is usually in charge of functional restoration. As a side note, I found the physio who worked with my surgeon’s patients post-surgery was far, far more knowledgeable than the other two I had seen previously. She was the first one to come out and say, “You will not re-injure yourself doing normal daily activities. You can’t stay in bed forever waiting for this to go away. You need to get strong and get on with your life.” Her approach was different and frankly kind of shocking to me at that point, but having reviewed so much research literature since seeing her, I now realise she was completely on the ball with the best-supported approach.

I’ll be compiling a Part Three, which will go over the evidence for some specific (conventional and alternative) treatments, beyond psychological and physiotherapy-with-functional-restoration. If there’s anything specific you’d like me to address, let me know! Let me use my university journal access for good 🙂 Do you have any questions about what I’ve covered? Do you disagree with this conceptualisation of and approach to chronic pain management?

A Chronic Pain Primer – Part One.

My radio silence for the last little while has been due to finishing my lit review on chronic pain management by health care professionals. It’s interesting stuff (to me, because I am a nerd), but it surprised me constantly how much there was in the literature that was taken for granted as the best way to do things, that I had never heard before. I’ve been a pain patient for nearly five years! Why hadn’t anybody told me this before?!

I wanted to share some of the big, important stuff in case anybody else didn’t know it too, and doesn’t have the luxury of journal access via their educational institutions.

The widely accepted definition of pain is from the International Association for the Study of Pain; “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage.”

There are a couple of important parts to this. Here’s the first one:

Pain does not mean something in your body is being or has been damaged. It feels like it, which sucks horribly. But pain in and of itself is not harmful. If you have new pain, get it checked out, thoroughly. But if you’ve been scanned and tested and your doctor had assured you there is nothing physically wrong, it’s okay to believe it. It’s okay to move your body without fear that further damage will occur.

This does not mean your pain is not real and valid. The pain might be an ongoing signal from an old injury that’s healed, or a disproportionate response to a minor injury, or occurring in the absence of an injury. The definition of pain means that pain is whatever the person feeling it says it is. End of story. So even if medical professionals can’t find a concrete physical cause for your pain, it does not mean that you are imagining it. More importantly, it does not mean it cannot be treated.

The bad news that nobody told me? It might not go away. It’s difficult to fix something if you don’t know what it is. Even where a specific physical cause for pain is identified, as with a damaged disc, and surgery is undergone to fix it, the pain may persist. Because your brain is blessed with the very cool and adaptive ability of neuroplasticity, it learns and changes. Once it gets used to feeling pain, it gets really efficient at feeling pain. It can amplify small amounts of pain or just keep re-sending the same ‘OUCH!’ messages once the problem that prompted them has stopped. For some people, this means that once chronic pain has developed and gotten really entrenched, it can be incredibly difficult to re-program and get things back to the way they used to be. So that’s the hard bit; there may not be a cure for your pain.

Stay with me though, because there’s good news. When the cause of pain cannot be cured, treatment can allow the reduction of pain, the reduction of suffering (that’s the emotional crappiness and distress that comes with the physical sensation), functional restoration (getting your body to be able to manage doing things you used to be able to do), and improved quality of life. And what it boils down to is that pain which has the disability and distress stripped away from it is manageable, even if you don’t ever know where it came from.

It’s not peachy-wonderful, because it’s pain, and it will always be a noxious stimulus. But if you can move and sit and exercise and go dancing and pick up your kids for a cuddle, and if pain is irritating but doesn’t cause you to become depressed and anxious and feel like the world is ending, and you can work and drive and have sex and pay your bills and get by without medication if that’s important to you, then you can have your life.

So, that’s the key. Finding ways to work with it. Getting to do what is important to you and be happy and fulfilled and well in spite of pain. I’m not saying it is easy, I’m saying it is worth it. Because living with pain can suck, but having pain and not living your life is the cause of way more suffering and heartache.

That’s easier said than done, you’re thinking. Pain hurts. It is by definition unpleasant. Well, yes. But a lot of things are unpleasant, and people manage to live good lives in spite of them. So the important thing is to get treatment that enables you to reduce the unpleasantness of the pain as much as possible. And I’ll talk about that in Part Two.

Let me know – are you sitting there saying, well, duh, or do you disagree? Or do you tentatively agree but haven’t been able to make it work for you yet? I agree with this whole-heartedly, and living well despite pain is my over-arching goal, but that does not mean I am a happy ray of sunshine every day, so I’m still somewhere in the middle too 🙂

Link Round-Up.

Happy Easter to those celebrating, and happy long weekend to everyone else!

I decided to ignore my normal no dairy, grains, or soy rules for Easter and just eat what I wanted. It was delicious, but I feel pretty disgusting now; fatigued and moody with a pretty distressed digestive system. In a way, I think it’s good for me to fall off the wagon every so often, because it reaffirms how much better I feel normally, and that what I am usually doing is the right thing for my body.

So in case anyone else is in a chocolate-induced cloud of bleurgh, here are some distractions!

A piece from Laurie Edwards on the differences in medication efficacy between genders, the higher incidence of women with chronic pain, and the impact of these issues on equitable treatment. I know I post a lot of links on gender disparity in chronic pain, but it’s an issue that keeps popping up in my dissertation research and one I’m passionately interested in.

If you are one of the lucky ladies (or gents!) on steroids for autoimmune disease, you’re likely dealing with a whole host of sucky side effects. This article has some suggestions for how to combat one of them – dry skin.

Michelle at Living with Bob wrote this wonderful post on dealing with the all-too-frequent criticisms that seem to permeate the lives of individuals living with health issues. How many times have we all heard, “You just need to x, y, and z! You’re not trying hard enough!”? I think the perspective shift she discusses is essential.

Amanda at Celiac and Allergy Adventures has some great ideas for identifying and coping with social situations in which food allergies or intolerances may be an issue. I don’t handle gluten, dairy, or soy well, but tend to feel uncomfortable requesting special accommodations, so I usually just don’t eat or eat it anyway and then leave suddenly when I make myself sick. I know this is ridiculous and I’m working on being assertive!

A chronic pain topic I think is incredibly important and not talked about enough; Tracy from Oh What a Pain in the… discusses some difficulties and potential solutions around having sex when you have chronic pain. A friend who did a multidisciplinary pain treatment had a fellow classmate come up to her and quietly ask her if she had any difficulties in this area. This poor lady was suffering and didn’t feel like she could discuss it with her doctors or bring it up openly in class even though it was severely affecting her marriage and quality of life. This breaks my heart. Sex is important to our health and we should talk about it!

Is there anything you’ve written or come across that you think I should know about? Let me know!

Silver Linings and Small Victories.

Another hard week, but heading in a better direction. So this week:

I am grateful for the discovery of new movies and songs that move me (sometimes literally, to dancing in my kitchen).

I am grateful for pain flares, because for all my catastrophising they are not, actually, the end of the world. I am grateful that I can and do manage them, and I am grateful that they pass.

I am grateful for the passing of the storm.

I am grateful for recovery after setbacks.

I am grateful for burgeoning wisdom.

I am grateful for improved coping skills.

I am grateful for chances to see how far I’ve come.

I am grateful for most of my lit review being written (although if I was suddenly gifted with the ability to write more succinctly, I would be grateful for that too!).

I am grateful for first cuddles with my nephew and the fact that he enjoyed them! I’m always terrified babies will bawl as soon as I hold them. I am also grateful for the smell of a baby’s head and teeny fingernails and podgy elbows and hope.

Silver Linings and Small Victories.

To be honest, I am having a terrible, horrible, no-good day. I’m miserable and in more pain than I have been for a while and panicking and hormonal. And I suspect, on days like this, it is even more important to be grateful. So here we go.

This week:

I am grateful for sunshine on my head and dirt under my feet.

I am grateful for making plans.

I am grateful for good stories to get lost in (I’m currently on a Juliet Mariller rampage; she’s one of my favourite authors, if anyone wants a fantasy rec).

I am grateful for my cat, her cuddles, and her purrs. She really is the cutest. If she wasn’t so hard to photograph (she’s all black except for five hairs on her chest) this blog would be plastered in pictures.

I am grateful for rain, cooling and calming.

I am grateful for seafood and bacon, because yum, and chocolate, always.

I am grateful for my patient man.

I am grateful for freshly made beds.

I am grateful for the exhausted relief that follows tears.

I am grateful for deep breaths.

How about you?

In, On, Move: A Wellness Series.

At the start of the year, I made some resolutions, which I’ve managed to maintain reasonably successfully. The core aims I had were to care for my body and try and minimise the strain on it by being mindful of what I put in my body to nourish it, and what I put on my body in terms of personal care. I also wanted to focus on moving my body when I am able in a way that celebrates the function and strengths my body has, rather than beating myself up because I can’t do things ‘right’, or as punishment for unhealthy eating, or purely to burn calories for aesthetic reasons.

I realise these things probably sound like no-brainers, but it took me a long time to start being kind to my body post-chronic pain and illness. I fought my limitations, berated my body for its weakness, and restricted food and pushed it to exercise in ways that made me unhappy because I was trying to mould it into something it wasn’t. My mental shift has been gradual, and I still have lapses, but I feel like I’m in a much better place than I’ve ever been before in appreciating my body and prioritising my health and wellbeing.

Wellbeing is a huge part of my approach to living with chronic pain and illness. The goal of a lot of current chronic pain management programs, when they can’t cure the source of pain, is to maximise wellbeing, or physical and mental health, even in the presence of illness and pain. My goal is to be as well as I can be given my circumstances, and the resolutions were my way of prioritising that.

Because I’m nosy, and I like hearing about what others do in their pursuit of health, and also because I use this blog to keep myself accountable for continuing to try and implement positive change, I wanted to start sharing some things I’m trying and enjoying in terms of food (in); beauty, personal care, and cleaning products (on); and ways of moving my body (move, obviously).

As with absolutely everything on this blog (and elsewhere on the internet!) these are suggestions. I like recommending what I’ve found helpful, but people vary! You may not have the same issues I have, and you may not approach things the same way I do, and that’s fine. If, however, you see something you think would be helpful for you, please, please, make sure with your health providers that it is safe for you to do, with your particular set of circumstances. Especially in the case of movement, one size does not fit all where sick people are concerned!

In: Having been in a particularly chocolate-craving frame of mind lately, I decided to give making my own chocolate a go. I don’t tolerate dairy, and soy also leaves my digestive system disgruntled, so since cutting those out of my diet store-bought chocolate is pretty hard to come by. I’ve had some luck with organic, raw varieties like Pana and Loving Earth, but they get expensive! I tried this recipe, which was quick, easy, and delicious. I used maple syrup as the sweetener and added in sultanas and crushed cashews to make a Cadbury Fruit and Nut imitation (apparently I am the only person alive who enjoys it!), but the potential varieties are endless. Tastes amazing, and no tummy dramas = bliss.

On: My skin has been struggling this week. My dermatitis seems to be getting worse and worse, and I’ve tried a variety of creams and serums which seemed promising for a day or two, and then exacerbated the problem. I also had a couple of giant, sore pimples, courtesy of having a couple of higher-dose oxycodone days.

My go-to emergency mask is just two parts organic raw honey to one part baking soda. I add in some oats if I’m particularly itchy. I just put the ingredients in a bowl, mix them with a finger, and then goop it on to a dry face (and in this case, chest and arms). Be warned, this can be messy, so do it over the sink. Leave it on for 10 – 30 mins (I like to have a bath in this interim so I’m not dripping honey everywhere), them add some warm water to your hands, work it in to exfoliate with the baking soda a little, and wipe off with a warm washcloth. Use a cotton ball dipped in half-and-half apple cider vinegar and distilled water as a toner afterward if you feel like going full hippie (by the time I followed up with my usualy moisturiser I no longer smelled like a bizarre salad, in case you were wondering).

I have crazily sensitive skin and this doesn’t bother me, but if you’re concerned, either patch test or use less baking soda to begin with. The honey is antimicrobial and helps with infections. I find this leaves my skin smooth, settles the flakes for a day or so (I tend to use it the day before I have somewhere nice to be), and takes the redness and swelling out of spots. Plus, I get a childlike glee out of smearing food all over my face. Just me?

Move: I have been all about yoga this year. I’m noticing distinct differences in my muscle strength with brief daily practice that fill me with glee, and most importantly, they can be done in the privacy of my lounge room, which means I can fearlessly wear a sports bra and shorts, and also do my routine directly in front of an air con vent. Key considerations to getting through a Western Australian summer! (Useless fact: the highest temp in my state this summer was 49 degrees Celcius, which is 120 degrees Farenheit. I can’t even.)

I’ve been mixing up back, neck, and shoulder routines from Ekhart Yoga on Youtube, with this and this being current favourites. She often outlines accommodations if you can’t manage a pose, but generally speaking hatha, yin, and restorative yoga are helpful for people with pain or injury. Several of these poses and stretches have been recommended for me by my physiotherapist, so they suit my issues, but be careful to find something that suits yours if you’re interested.

I’d love to hear what you do to keep yourself well and get some new ideas (like I said, nosy).

The Patient.

While being fully aware of the beneficial effect of a positive and optimistic mindset on pain management, I am also a firm believer in the therapeutic value of validating experience. So in the interests of being honest and accepting about what I am feeling: I feel awful.

My 16-hour excursion just over a week ago (public transport, a lecture, errands, a meeting, a car trip, more public transport, and several hours at a crowded music festival alternating between standing and sitting on the ground) precipitated a massive system shutdown. Which I expected, but I didn’t think it would be this severe. I realise I probably deserve it for going so overboard, and I think it was worth it, and I realise when you can’t cure chronic pain you have to find ways to live your life anyway. But ugh. So awful.

I managed to avoid drinking at the festival, but ingested a lot of refined sugar and somehow inadvertently some gluten (don’t ask me how I know!), which potentially have made this worse. I also got sunburned at uni yesterday, so I’m headachey and extra-fatigued on top of already being bone-weary, nauseous, and brain-foggy.

I don’t have the energy to prepare meals, or to make myself eat them, so I’m eating one meal a day. I don’t have the energy for yoga so my stress and muscle tension are worse, and the gains I had been making in flexibility are diminishing. I’m behind in my reading because my brain won’t work and I’m exhausted, so by the time I get into bed I’m too stressed to sleep. Then I end up double-dosing my sleeping medication, waking up med-hungover and late, and wasting half the day gearing up enough to do basic tasks (don’t ask if I’ve showered today). I’ve had to go back up to my prescribed painkiller dose, which I had been reducing successfully, which makes me stupid while it’s working and exhausted once it’s over.

The cycle is frustrating and predictable, but feels unavoidable. I feel stuck.

There are things that are incredibly difficult for me and yet helpful, like being kind to myself and asking for help when I need it. Sometimes I get the vague suspicion that these things are what chronic pain is in my life to teach me. The lessons are hard. But in the interests of doing them, I’m asking.

What do you do at times like these, when you are at a loss and nothing is helping? How do you pick yourself up again?

I’ll start, and I will implement these tonight (or may the gods of internet accountability smite me!), even if it means getting further behind on chores and uni work, because if I am not well, none of those things get done anyway.

I will eat a healthy dinner even if I am tired, because my body needs fuel to function.

I will have a warm bath with Epsom salts, while watching an episode of something cheerful and trashy.

I will do 20 minutes of yoga (I like this one at the moment) and I won’t skip through the meditations because I’m too busy.

I will listen to this and remember to be patient and wait it out.

I will get into bed and have a cup of passionflower tea.

I will turn off the light by 10:30.

I will breathe deeply.

I will trust that this too shall pass.

Your turn. I would love to hear your suggestions.

Stealing Beauty.

This post is going to be vain and self-indulgent, but I’m putting it out there anyway in case any of you can relate.

I hate what my illness has done to my body. Not in the reduced function and pain (although that sucks too), but to my appearance.

So much of our identity and how others perceive and therefore treat us is constructed from the way we physically present ourselves. I’ve been looking at research into healthcare professionals forming judgements based on their beliefs and attitudes about pain and pain patients, and how that reflects their practice (hint: it does, and often not in good ways). It has been said that it is hard work presenting as a credible pain patient, and that this is particularly difficult for women. We are faced with the dilemma of having to appear ‘sick’ enough to warrant treatment, while still not looking like we’ve ‘let ourselves go’ (because that might mean we’re depressed, and that might mean the pain is all in our heads). I’ve actually had a (male) general practitioner tell me I would feel better if I put more effort into my appearance. My mother, while seeing a (male) lawyer regarding a motor vehicle accident (she was in a full leg cast at the time), was told “she was made up so she couldn’t be that bad”. We can’t win.

But truthfully, that isn’t all of it. It’s not even the visible illness markers, like my cane, or a walker, or my surgical scar (which I am oddly proud of and wish I had the chance to show off more often). These things are interpreted by the general public as signifiers of specific problems, which, while still a bit embarrassing at times, are associated with legitimacy and sympathy, and a sense that it’s not your fault.

The things I find humiliating, and that I get furious about, are the little, silent things about my appearance, that others don’t attribute to my illness. My frizzy hair, the result of autoimmune hair loss and my body’s feeble attempt to slowly regrow the lost hairs. The thin patches in my hair from the same. The ironic extra hair on my extremities caused by my body’s lack of capacity to regulate temperature, and the excessive sweating caused by the same. My frequent inability to deal with this hair because sitting at a salon or bending to shave my legs is physically difficult. My red, blotchy, flaky skin, courtesy of the autoimmune rash and dermatitis that has now spread over my face, chest, back, and upper arms, and which does not consistently respond to anything. The numerous unexplained small bruises I’ve been experiencing since I got sick. The white toes and purple feet and legs of Raynaud’s phenomenon. The two or three kilograms of bloating that can follow consumption of any dairy or grains and make my clothes immediately ill-fitting and awkward. My hunched, limping gait on days when I am stiff and sore but not bad enough for a walking aid. My need for appropriate (and usually un-fancy) footwear to negotiate walking and stairs when I can’t feel my leg.

Then there are the physical indicators courtesy of pain and pain medication that I fear get read as ‘junkie’; shaking, sweating, a face full of pimples, scratching at my ever-itchy nose, and dilated pupils, accompanied by rushed speech and trouble concentrating.

Pain and sickness are ugly on me. I hate that people who don’t know I’m sick might interpret these things as laziness, or a lack of awareness. I hate that it takes me twice as long to look half as decent. I hate the expensive and often ineffectual hunt for beauty products I can use without disrupting the ever-so-delicate ecosystem of my body, and that the products I do find often don’t work as well. I hate that this illness is stealing what should be my ‘pretty years’, when I’m at a good weight for me, and I’ve grown out of youthful awkwardness, and society still wants to look at me. I hate that the social phobia I conquered as a teenager is re-emerging, based on all these fears and insecurities. I hate that it’s vain and self-absorbed to talk about these things, even in the midst of a society that teaches women that their value is based on their appearance.

Most days, I can get over these things. I can square my shoulders and head out feeling ugly and self-conscious. But today I can’t, and that’s okay. I’ll try again tomorrow.