Tag Archives: mental illness

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.

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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 🙂

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.

Silver Linings and Small Victories.

Being chronically ill or in pain is not, generally speaking, particularly awesome. It isn’t always terrible, but sometimes it is, and people aren’t exactly lining up to be gifted with the eternal joy and enforced co-dependency of being sick for most of their lives.

Also, chronic illness and pain aside, I am not a hugely positive person. I am sarcastic and cynical and live with the mentality that, if I expect the worst, at least I can prepare myself for it, and if it doesn’t go as badly as I’m expecting, I’ll be pleasantly surprised. I have kind of a dark sense of humour. I understand that this type of disposition makes you more prone to depression and a short, nasty, brutish life, but it’s a hard thing to turn around.

I’m probably slightly more complainy and pessimistic on this blog than I am in real life, because I feel like I can vent about the negatives to the faceless internet in a way that I can’t always to the people who love me, care about me, and worry about me. Plus, they get sick of hearing it by virtue of being stuck with me a lot more often than my readers. Having this blog as an outlet for when I am struggling or things aren’t going that well is important, and serves a purpose for me.

However, I don’t want it all to be doom and gloom here. There is research in the positive psychology and resilience realm which indicates that individuals with chronic pain and illness who practice mindful gratitude – taking time to note what is good in their lives and for what they are grateful – have better outcomes.

(Side note: this topic is something I have encountered in my studies, but a quick search turned up these two pieces of related research for anyone interested:

http://greatergood.berkeley.edu/pdfs/GratitudePDFs/6Emmons-BlessingsBurdens.pdf

http://hpq.sagepub.com/content/early/2012/03/12/1359105312439733.full.pdf+html)

I don’t want to pretend it is always (or even ever) easy to be grateful for my illness and pain, but there are things in my life which I am grateful for and proud of, which have come about as a direct result of my spinal problems and autoimmune disease. So, I will be making a concerted effort to, once a week, make note of them here. Sometimes there might be lots, sometimes only one, but this is me making myself accountable for my own mental health in the face of adversity.

This week, I am grateful to have a mother who understands what I am going through.

I am grateful to know how deeply my partner cares for me and wants to help me.

I am grateful to be much better than I used to be at prioritising what is truly important and to have finely honed time management skills.

I am grateful to have access to the internet, which facilitates connection and entertainment when I cannot leave my house, or my bed.

I am grateful to have grown in patience and to have a less judgemental attitude than I used to.

I am grateful to have a significantly increased capacity for empathy for those who are distressed or suffering, which will make me a better psychologist, in addition to making me a better person generally.

What are you grateful for?

In the Words of Others.

So there are lots of people smarter than me who also write about chronic illness and pain, and rather than continuing to collect hundreds of bookmarks, I’m going to use semi-regular link round-ups to keep track of them and hopefully share the wisdom (and ridiculousness).

http://www.xojane.co.uk/healthy/my-bad-health-isnt-a-choice

An excellent article, written by someone with the same class of illness as me (connective tissue disease) on why unsolicited health advice based on the assumption that you are ill because you make bad decisions is unhelpful and often unnecessary.

http://www.psychologytoday.com/blog/turning-straw-gold/201212/physical-illnesses-may-soon-be-labeled-mental-disorders

Ugh. Uggggghhh. An overview of the proposed changes introduced to the DSM-5 (used by health professionals to classify and diagnose psychiatric disorders) regarding the ridiculously broad and all-inclusive Somatic Symptom Disorder; the symptoms of which describe pretty much every sick person ever, including those with, for example, cancer or diabetes.

http://www.umass.edu/fsap/articles/ill.html

A basic but helpful primer on living with chronic illness.

http://www.spine-health.com/forum/treatment/back-surgery-and-neck-surgery/post-op-must-haves-0

A wonderfully comprehensive list of what to do and take before surgery and what to have handy afterwards; geared towards spinal surgery but useful in general. Also, note that some of the products are American (a ‘johnny’ is an open-backed hospital robe, if anyone was wondering). A lot of products like ‘grabby sticks’ (my term), shower and toilet chairs can be hired short term from chemists, hospitals, or Medihire. I wish I had seen this before my back surgery, as there are some great ideas (towel on bed = genius) but I am bookmarking it for future use.

https://www.facebook.com/may12th.awareness/posts/10151168199522161

Some thoughts on invisible illness and the ubiquitous “But you don’t look sick” (to which my internal reply is usually, “Well, you don’t look like an insensitive ass, but here we are”).

http://www.redcross.org/prepare/location/home-family/disabilities

A link to a Preparing for Disasters kit by the Red Cross for people with disabilities and illness. I live directly next to a frequent bushfire area, and we are currently experiencing a pretty massive heatwave, so bushfire preparedness is on my mind. People with mobility issues need a solid plan in place before something happens; if I’m having a day where it takes me ten minutes to get from my bedroom to the front door, I need to be on alert for emergencies to get myself out in time. I also need to know that someone else can grab my cat to bring her out if I’m not able to carry her.