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.

Link Round-Up.

Here’s what I’ve been reading this week:

Toni Bernhard, who blogs for my favourite magazine Psychology Today (yes, I am a nerd) has written a lovely piece on how to cope with bad days. I like that this is realistic; those sunshine-y ‘Think about bunny rabbits and cheer up!’ type strategies tend to leave me grumpier than when I started.

I realise my link round-ups seem like they are entirely composed of xoJane Healthy and It Happened to Me stories, but what can I say? I love xoJane and I find the stories individuals construct of their illness experiences fascinating. This one is by a young woman who rapidly developed Multiple Sclerosis.

Sarah Wilson, of I Quit Sugar fame, has Hashimoto’s disease (underactive thyroid) and wrote this interesting post on common exercise mistakes. It is largely geared towards weight loss, but I was particularly interested by the idea that excessive exercise (potentially in response to the ‘obesity’ and dieting epidemics) could be contributing to the rise of autoimmune disease. I think her exercise recommendations are well suited to people with chronic illness regardless.

Britt at the Hurt Blogger brought to my attention that ePatients (essentially anyone who uses the internet to navigate chronic illness) have the opportunity to apply for a scholarship to attend the Stanford Medicine X conference. Applications close March 15, so have a look if you’re interested (and able to travel to Stanford – I would love to but it’s a little far for me!).

And via the lovely Sarah of Fibro Feist, a link to a list of 20 things sick people never take for granted. I had to laugh at soap; my quest for (preferably nice smelling) things I can slather on my skin without breaking out into a rash is never-ending and expensive!

Silver Linings and Small Victories.

Late again! Bad self.

Each week, I try to take a moment to be grateful for the good in my life, despite (and sometimes because of) illness and pain. This week:

I am grateful for outings; absence has made the heart grow fonder and now on a night out I try to treaure every moment.

I am grateful for my body’s capacity to surprise me, occasionally, with ninja cat reflexes that I am not expecting, thus making me laugh.

I am grateful for my body’s healing, and my first time wearing a corset since back surgery (not recommended in the first several months, or for frequent use since they can weaken your core muscles, but they look amazing!).

I am grateful for the incredible talent in my sleepy little town; we saw a cabaret of music, burlesque, acrobatics, contortion, magic, and dance last night and it was enchanting, and I never use that word.

I am grateful for my partner’s patience when I am in meltdown mode, and his reassurance that it will turn out okay, and the fact that it always, eventually, does.

I am grateful for access to a range of healthy, delicious food that doesn’t make me sick and miserable.

I am grateful for novels to allow my brain a sigh of relief in the midst of dense academic writing.

I am grateful for long, hot baths in Epsom salts.

What are you grateful for?

What Do You Know?

I have a bit of crowd-sourcing to do, just to satisfy my own curiosity, if you’ll indulge me by replying in the comments.

In your understanding, what is the biopsychosocial model of pain management? Have you ever heard of it? Has a health professional used or explained the term to you? What do you think it involves? Whether you’ve heard of it or not, what’s your best guess as to the best way to treat chronic pain? It doesn’t matter if you have no idea, I’d like to hear about that too!

In my recent reading I’ve been seeing a lot that suggests health professionals and patients might have incompatible perspectives on pain, which may be causing some of the communication issues that can arise. I’d be really interested to hear your thoughts, particularly given that I expect all of my readers are patients and also pretty well self-educated via internet resources. And thank you for bearing with me while I read ALL the articles! 🙂

Link Round-Up.

Also a little late this week, but a few things that have caught my eye recently in between journal articles:

http://www.alexandrafranzen.com/2013/02/03/how-to-say-no-to-everything-ever/

Sometimes saying ‘no’ is vital to our health – most chronically ill people I know have had to scale back significantly on commitments – but it can be really hard! This is a great formula for doing so kindly.

http://www.sarahwilson.com.au/2013/02/things-feeling-shit-full-its-ok/

An important reminder to keep digging when things are less-than-awesome.

http://www.aaup.org/article/chronic-illness-and-academic-career#.UR

Notes on being chronically ill in the academic sphere. While focused on academic staff, many of these issues also apply to students, and I’ve encountered difficulty with some of them, such as brain fog or fatigue being perceived as a lack of intelligence or motivation. My tertiary education has been a continuous struggle between being accorded accommodations I require for success without destroying my health, and the fear of being perceived as stupid and/or lazy.

http://www.xojane.com/it-happened-to-me/cluster-headaches

A personal account of living with chronic pain in the form of cluster headaches; a lot of the points in this resonated with me. Cluster headaches were one of my initial diagnoses when I started getting occipital neuralgia; I was glad it turned out to be wrong!

http://www.xojane.com/beauty/beauty-as-medication-its-an-effort-but-i-put-on-make-up-today

I liked this piece from a young woman with Crohn’s disease on getting dressed and made up to make yourself feel better when you’re sick. Putting on makeup (or even brushing my hair or showering) can be so hard when you’re fighting massive fatigue and pain, but if I can muster the effort to put myself together it usually does help, even if I’m the only one that sees it. Then again, I get anxious when my regrowth and eyebrows look bad (and it always happens at the same time!), so maybe that’s just me.

http://www.slate.com/blogs/quora/2013/01/14/medicine_and_hospitals_a_doctor_s_advice_for_being_admitted_to_a_hospital.html

Some aspects of taking care of yourself in hospital that wouldn’t have occurred to me as a patient, but certainly could be valuable, particularly for hospital ‘frequent fliers’.

Silver Linings and Small Victories.

A little late, but this week:

I am grateful for my body periodically deciding to be a team player, despite me berating it a lot of the time (I can hold a 30-second shoulder stand now! And I just reached my goal weight for the first time since puberty! I went on a horse trail ride!)

I am grateful for a partner with a sense of humour; I spent hours cooking on Valentine’s Day and developed serious gastrointestinal dramas shortly after he arrived home, so spent most of the evening in the bathroom, which was not what we had envisioned!

I am grateful for my capacity to be a good friend.

I am grateful for improved sleep and new prescriptions to try.

I am grateful for the discovery of a dairy-free and grain-free chocolate sponge cake that tastes just like regular cake (read: delicious).

I am grateful for stomach-cramp-causing hysterical laughter.

I am grateful for smart people writing research and blog posts that are insightful, informative, and a pleasure to read, and that restore my faith in humanity after I’ve read bad ones.

I am grateful for funny cat pictures.

I am grateful that every day is a chance to become better in my habits.

How Far We’ve Come…

I’m flat out doing chronic pain care-related reading for my dissertation in preparation for uni starting back up in a couple of weeks, and hopefully I’ll get around to sharing some of the findings I’ve been reading about here soon, but I wanted to drop in and share something in the meantime.

In an article I was reading, I found reference to another article, which was from 1978 and titled ‘Treating Hateful Patients’. I’m going to let this sink in for a moment; not only did this get written using this terminology, indicating it was common parlance at the time, but it was published in a peer-reviewed, respected, professional journal (which these days generally have very high standards relating to the use of non-discriminatory or emotive language).

So next time you’re cursing an unfeeling or inept medical/health professional (and I’m sure we’ve all met at least one!) take a moment to remember it could be worse; you could be seeking treatment in 1978! 😉

…And for anyone wondering, a) These days they (we!) are generally referred to as ‘difficult’ patients, and b) No, I didn’t track down/read the article, I’ve been reading enough frustrating content in the current literature and I didn’t think I could take it!

Link Round-Up.

http://www.psychologytoday.com/blog/turning-straw-gold/201208/more-what-those-chronic-pain-or-illness-don-t-want-hear-you-say

A crowd-sourced summary of common annoying and ignorant responses to the chronically ill or in pain from others. I’ve had nearly all of these at one time or another and I’m sure a lot of you have too. Print out for insensitive family members and friends!

http://bobisdysautonomia.blogspot.com.au/2013/02/well-at-least-its-not.html

In a similar vein to the previous link, a note on why the response, “At least you don’t have [insert horrible thing]” is not helpful.

http://www.alexandrafranzen.com/2011/03/19/how-to-survive-when-everything-sucks/

Tips for how to get by when life is crappy. This isn’t illness-specific, but most (if not all) of these would be suitable for those times when I’m wallowing in “why me?”, and many could be done from bed if you are having a particularly nasty flare up.

http://fibrofeist.com/2013/02/05/what-i-need-you-to-know-i-do-wonder-why/

I love this series from Fibro Feist, and this piece was really moving for me. I think we all wonder why from time to time, and wonder if there was something we could have done differently to avoid getting sick. For my part, I know my issues had a genetic contribution, but various genes can be activated by environmental factors (the study of which is called epigenetics, if anyone wants to learn more), and I wonder if I could have avoided triggering mine. I’ve been worrying a lot lately about what I can do to prevent activating (if not transmitting) my sub-par genes in my hypothetical future children.

http://sunlightinwinter.wordpress.com/2013/02/05/violins-and-enhanced-sensory-maps-2/

I found this so interesting! I like the idea that all of us individuals with chronic pain are really just very well-practiced and highly skilled at detecting pain – it’s nice to occasionally re-frame what feels like a weakness as a strength. Plus, being hyper-sensitive to stimuli would have an evolutionary advantage; since many of us are too sore/fatigued/immobile/horizontal to run away from or fight off a threat, it helps if we can detect potential threats early!

Silver Linings and Small Victories.

This week:

I am grateful for my body’s ability to surprise me, by being able and willing to jog on the spot for a couple of minutes one day and (very briefly) hold a shoulder stand the next – both firsts in a very long time.

I am grateful for the body next to me when I’m lying awake in the darkness, which (to paraphrase Tool) reminds me that I am not alone.

I am grateful for the sound of my partner’s heartbeat, my cat’s purring, and the white noise of the pedestal fan, which form a relaxing symphony to keep me company when insomnia is making me feel lonely.

I am grateful for yoga which decreases my anxiety, and my body’s effort to engage in it.

I am grateful for moderate productivity and higher energy this week.

I am grateful to people on the internet, sharing recipes and helping me to nourish my body and build my confidence in the kitchen.

I am grateful for delicious Paleo espresso brownies.

I am grateful to academics who share wisdom and guide the way for the rest of us.

I am grateful again for moments of connection, where someone else on the other side of the world reaches out a hand, and says,“You too? I thought I was the only one”.

See-Sawing.

Growing up, I did ballroom dancing for several years. As an adult I’ve always wanted to get back into the Latin side of it (give me a Paso Doble over a foxtrot any day). My partner was wanting to give it a go too, so we bought an online voucher for eight weeks of lessons last year in June, around the time of my back surgery. We knew we had plenty of time to use them after a couple of months for my recovery.

We’ve talked about it intermittently since then, but never made concrete plans, since my recovery didn’t go as expected and I’ve had several facet joint and nerve flares since the surgery rather than the smooth sailing I was expecting. I thought we had until this June, he thought March, so we checked the voucher recently to confirm. Turns out it expired at the start of January and we had missed our chance. I was so upset.

It’s not just the waste of money (it wasn’t that expensive), although I did feel awful since he had paid for it and it was my fault we hadn’t used it. I was disappointed because it was something we had both been looking forward to (we’ll probably still get around it to eventually). But mostly, I was upset because it drove home the fact that, in the last seven months, I haven’t had eight consecutive weeks in which I was pain-free enough to go dancing, despite having spent roughly $7000 out-of-pocket on painful back surgery that was essentially guaranteed to fix me.

I had vastly different expectations for how the last six months were going to go, and it didn’t pan out, and I am disappointed and grieving my loss. That’s life, particularly with chronic illness and pain. On the plus side, I did a shoulder stand for about 2 seconds yesterday, which at any earlier point in the last five years would have been impossible, and I was filled with a massive sense of excitement, pride and achievement. Here’s to the ups and downs!