Tag Archives: chronic pain

A BADD day

I hadn’t thought I’d be doing a BADD post this year but the timing was impossible to ignore. As some twitter followers will have seen, I absolutely lost it on Wednesday evening after a conversation with my boss. I tweeted a full on screaming tantrum against him and against disablism in the legal profession (in my paticular case, predominantly arising out of the long hours culture but the need for a secretary is also increasingly frowned upon as unnecessary expenditure) and my experience of it. I can’t tell you how much physical pain I was in at the time of that rant. I was quivering with it. I’d been pushing myself to the brink of collapse over a period of months when my boss started a conversation (in the presence of another colleague) about formally increasing my hours. As much as anything, I think that after so publicly losing it and criticising my boss, it seems important to clarify what happened next equally publicly. I’ve since deleted the tweets because of my subsequent conversation with him.

I didn’t lose my temper then and there. I didn’t say much at all because my mind was racing as I was thrown back to all the things that had happened in the past. His tone wasn’t rude or threatening but he was asking me to commit to something that had been too much for me in the past. In nearly three years in this job, I’ve had one sick day and that wasn’t even connected to my back but on my old working hours it was rare to even get through a month without sick time because I was simply trying to do too much. I didn’t just see red. I felt overwhelming panic. I was already in so much pain. How could he ask this of me? People can be quite scathing over the issue of triggers and trauma but later I realised that I am still traumatised at a fundamental level by what went on in my last firm. The bullying and threats, the disbelief no matter how much medical evidence I produced, the criticism of my character. And most of it was delivered in “reasonable”, if patronising, tones. At one point six years ago I called the Samaritans. I wasn’t suicidal but I felt utterly worthless because I was being told I was. Pain Concern were supportive too but ultimately, after I finally got the courage to stand up for myself, demand the firm order an independent assessment from the Occupational Health team and put up, shut up or fire me and get sued, I ended up seeing a therapist to try to piece myself back together and I was still left doing too many hours.

I am a solicitor. It’s part of my identity. It’s not just a job to me, even though one partner seemed convinced I was a dilettante playing at having a job (seriously?? My parents are not that well off!). It’s a vocation and thank god for that because that keeps me going. They broke me and it didn’t stop hurting. It was made worse by the fact I’d worked there my whole career. Why couldn’t they see me as I am? Why couldn’t they see the determination and passion for my work that got me out of bed in spite of the pain? Why couldn’t they see how honest I am? On one level, I know now that they could see those things. They were threatening other people, unbeknownst to me, at the same time. It was two years before I discovered that in one particular instance, they’d been trying to manipulate me using my guilt and fear of losing my job, while at the same time pulling colleagues in and threatening them but without the shadow of discrimination. My disability was a stick to beat me with. On another level, I still believe them. I still feel that I’m worth less than the next solicitor, despite being more talented than most.

I know I’m predisposed to thinking if something has happened in one way once, it will happen again. Knowing that doesn’t change it. Three years, almost to the day, after the Occupational Therapist asked me:
“did a solicitor complete this form?… because they didn’t tick the box asking if you have a disability”
(“Yep. An employment lawyer”
“They don’t believe I have a disability”
“…but it’s obvious that you have a…I’ll answer the question anyway, shall I?”
“Yes please!”),
I joined my current firm on the basis of a three day week. I explained my disability without having to give as much excruciating detail as some interviewers expected. There were a few teething problems but on the whole, they were respectful and I started to feel like a human being and not as a partner in my previously firm had once introduced me, “The One With The Back”. But the fear was there.

At first, I stuck to three days. Then I increased my hours for two to three weeks while a colleague was on holiday and dropped back down again. Then business started booming and I started doing more. Most often, I spend an hour or so drafting at home in my pyjamas first thing on my rest days and drop tapes off for my secretary so I can review them the next day. Some weeks there’s no need but I might have a long stretch of a couple of months where I do that on every rest day. I also frequently work until 6.00pm and sometimes 7.00 or later. If I didn’t have an excellent secretary who is dedicated, interested and has just the right amount of initiative, it would be harder but, fortunately I do.

The day after that conversation, I went in on my rest day and talked to my boss. It probably did me good to vent so much on Twitter the night before and a couple of people, together with my mum, helped get me to the point of going in to talk to him (thank you to them). I’d slept incredibly badly because of the pain and, having woken up at 5.30 with my lower back in desperate need of a walk, as well as the mid and upper back and shoulder pain I’d gone to bed with, I decided to go in first thing…just as soon as I’d drunk a few pints of coffee and stood under hot water for half an hour.

My biggest worry wasn’t that I’d fly into a rage. It was that I’d start shaking and become incoherent. I really don’t do confrontation well. I explained that I’m aware I’m an unusually private person in an office where a number of people talk a lot about medical issues and that I’m concerned that may give the impression I’m “fine”. On the contrary, being in pain 24/7, I decided quite some time ago that there’s no point talking about it. It’s always there. It’s an absolute given. So what’s the point? Then I explained I’m actually at breaking point after a long period of overdoing it and that I’m worried about him asking me to formally increase my hours.

He was shocked and mortified. It turns out it he never wanted to pressure me to do more and it just came out wrong. I told him very briefly in general terms what happened at my last firm and about one specific incident and he was horrified. He said he really didn’t mean to make me feel like that was happening again and that, if anything, he was trying to say the opposite. He’s been worried I’ll think the partners are taking the piss by not paying me for all the extra hours I do over my contracted three days because I don’t claim them all and wanted me to know he’d recommend changing my contract and paying me more as pure salary if I want to formally increase my hours by a couple of hours a week because I seem to work at least that so often. If I don’t want to do that, we talked about how not all overtime directly leads to fee income (eg because my secretary’s was off for over half of April) and that I can claim more than I have been. He also admitted (without prompting) that he’s personally been taking the piss a bit by assuming I’ll be in at some point every day and asking me to have meetings with him when I’ve only popped in to drop tapes I’ve done off for my secretary and asking me for urgent work when my secretary’s been off so that I ended up having to do all the typing myself.

We didn’t need to talk for very long to clear the air and then I left for a proper day off. I’m glad I decided to talk to him. It probably was good to tell him even one incident of what went on in my last firm. I came to this firm off the back of years of suspicion, bullying, threats and atos-style assessments and I haven’t felt that my job is safe here. I went into absolute panic when he said “formally increase your hours” because I’d been forced to put myself through that before. He gets that now and he probably gets me a bit better too.

On Friday, he couldn’t wait to push me out the door at the end of the day, saying he didn’t want to see me stay late again. He saw me pushing work in my bag to take home but (as I’ve said to him before), I often work best first thing so I’d rather it’s there so I can do it if I’m up to it. So far I haven’t been (maybe if I didn’t feel the need to write this to clear his name, I would!).

There are lessons in all this. I now know I’m far from over what went on in the past, although being in the state I was in in terms of pain and exhaustion probably amplified my panic response. And now I know that I am trusted here and that the energy I put in is appreciated. I had thought that was the case, which was another reason why suddenly hearing something that sounded like the opposite hit me so hard. In many ways, I’m a great employee to manage because I’m never any trouble and never even mentioned in the vicinity of trouble but this is something that has been lying under the surface. I didn’t want to talk about the past with him before. Judging by other people and the things I know they talk about, that may actually be quite unusual but I suspect quite a lot of disabled people come to new jobs quietly carrying the lingering shame imposed on them by other people in the past. Maybe the good employers who want to do right by us need an awareness that that’s a possibility, even though we’ve chosen not to say it, but there are good people out there who want to do right by us and, ultimately, that’s why I decided to blog this year. It was a misunderstanding and my boss deserves to be acknowledged as one of those good people.


Disability Confident

#disabilityconfident gave me pause. It made me reflect on where I am now. I spent a decade from the age of 17 fighting my own suspicion that what was wrong with me was mostly that I was just weak. I was making a fuss about nothing. I had a gp during my first few working years who would just ask me how stressed I was at work every time I saw him. Underneath my efforts to get a diagnosis and treatment there was always the sense that maybe I was just weak and lazy. I didn’t, not for one second, see myself as disabled or becoming disabled during that period.

Things changed in 2004. They got dramatically worse in fact. I couldn’t work any more. Suddenly being disabled became something I had to admit to in the course of battling for the insurance monies which would save my home and my job (the DWP didn’t give me any trouble at all over Incapacity Benefit). I wasn’t at all confident about having a disability. I was called faking, lazy and self indulgent over the next nine years, even after returning to work after a three year absence having taken the risk of racking up thousands in debt to skip the long waiting list and have surgery privately. Fortunately, there were also healthcare professionals telling me the opposite. I had serious problems. I was working as hard as anyone could to deal with them. And, ultimately I had to accept it too, this was a permanent state of affairs. When my employers were the ones challenging my work ethic, I also had the praise of clients, who had no idea what was going on in the background and thanked me for the quality of my work, my diligence and my care for them. They never knew most of my self esteem was bound up in them at that point.

It was to be three years before I learned that the worst series of meetings, at the height of the financial crisis when fee income had dropped across the whole firm, mirrored meetings with other people in my department. My disability was a stick they used to “motivate” me, while other solicitors were also being threatened in other less personal ways. I found out because they stuck to this “management technique” and I ended up talking about it with a colleague. It was only when he filled me in on what had happened to the others that I found the courage to say that I was out performing full time employees and they’d better be ready to let those people go if they came after me. They’d been right, you see. I’d felt guilty and inadequate that I couldn’t put more hours in. Their focus on my disability isolated me.

Almost a year to the day ago I found out I was being laid off in the course of a merger (ironically the redundancy process was the first time I ever heard my employers openly acknowledge that I had a disability at all!). I’d just written a long, statistic heavy blog post on the challenges facing disabled jobseekers. All of us, regardless of qualifications, are at a massive disadvantage in the jobs market. By that time I’d spent years pushing myself to the point of collapse, just to keep my job. I’d tried and failed to find a new one after being directly threatened with dismissal for my “lifestyle choice” of needing to work part time. My routine a year ago was completely geared to surviving until I could change that one thing: my job. I had nothing left over. Quality of life is such a relative concept. For some people even breathing unaided is impossible. For me, the single biggest impact of my disability was that a “work/life balance” became impossible.

Last Spring I wrote a post about the advantages of being temporarily unemployed with chronic back pain. It was stressful, don’t get me wrong, but my body was absolutely desperate for the three month break I got and although I only had statutory redundancy, it was enough to see me through that period. I did find a new job and it’s one where I’m working hours I can cope with. Nobody in my new job’s suggesting I’m overstating the problem. Nobody’s asking for more than I can give. Nobody’s criticising me for having a life outside the office. There’s no guilt or shame attached. Physically it didn’t all fall into place immediately – when I started the new job I had a long commute for the first few months, along with very little secretarial cover – but the three month rest beforehand helped.

Then one day I realised my life had changed immeasurably. I have energy for more than just work. It’s a confusing luxury to actually get to make lifestyle choices. I’m not sure what I’m going to do with this new power over my own life yet but at least I can see now that I have some. I’ve realised how much my life has changed for the better, if I let it. And emotionally? I’m finally in a place where it’s fine to just be me. I don’t have to talk about it or justify it. Having a disability isn’t part of a battle anymore. It’s just something that is. It’s taken for granted by the people around me and that is what makes it possible to be confident about it.

Keeping a Pain Diary (there’s an app for that)

I’ve always been quite negative about the idea of keeping a pain diary because it makes me to focus on pain I’d rather do my best to ignore. I can’t really but I keep my conscious focus on what I’m doing and try to bury the creative similes to describe what I’m feeling. I don’t want to checklist all the various bits of my body to identify each part that hurts and label the type and level of pain. I don’t think we should be too focused on the pain but that’s not to say I’m a shining example of how to manage chronic pain because I tend to shove the awareness of it to one side and overdo things.

Sometimes it’s important to keep a record though. When new problems start or old ones worsen, it’s important to work out exactly what hurts, what exacerbates it and what eases it. Anyone with chronic pain will always be asked to fill in a pain questionnaire by doctors in the diagnostic and post-procedure/surgery phase. Some women may also want to track hormonal variations from month to month for a little while in case there’s a pattern (it’s very common for perception of pain to increase around your period but I’m a bit more prone to joint instability for a few days each month too – seeing patterns prevents the worry that something new might be happening). Trying a new treatment or being put on new medication can be a reason to track both the pain and other issues – throughout the 18 months I was on pregabalin because a well meaning consultant thought “if all else fails it’s fibro” (in fairness to him, what the hell was the health insurer thinking when it sent me to a knee expert??) I had a host of near daily symptoms like blurred vision, slurred speech, mixing up my words, an odd kind of brain stutter and fatigue which turned out to be “silent” migraines being triggered so frequently by the drug (which did nothing for the pain). It can also be important to keep records if you’re in a dispute over your condition with employers, insurers or the DWP. I didn’t share the records but they helped me to be clearer in what I was saying.

There’s also an argument there that if you’re bad at remembering to take rest breaks and change position, consciously tuning into the pain for the diary helps with that. I’m like that. I wouldn’t recommend much about the way I work but I do have one bit of advice for office types with similar problems to mine. Don’t have a printer in your office. Seriously. If you have to collect printed emails from a communal printer regularly, you’re giving your back a series of mini breaks it might not get otherwise.

I’m one of those people who lets emails about admin tasks at work gather dust while I focus on things I find more interesting and more important so the admin involved in recording my pain seems like too much hassle. But there’s an app for everything. I found a flexible app (Manage My Pain) which allowed me to list all the weird symptoms and input my own range of descriptive terms. I could also add my own exacerbating and alleviating list, which was really handy. To make life easier, if one day’s problems are much like the next, there’s even a repeat button on the app. The app also generates professional looking reports from the data inputted if you need them. If you might show the data to anyone, I’d say to be careful about descriptive terms though because they’re taken into account by doctors and assessors, who might see psychosocial problems if your descriptive terms are too inventive. One of mine was that it felt like broken glass was being ground into my spine but fortunately I eventually found the right doctor, who rid me of that one by killing the nerves to the joints (although I didn’t use that description, even though it was most accurate way I had of describing the pain to him). That highlights another advantage to periodically keeping a pain diary. By paying attention to the different types of pain I could see past all the surrounding muscle pain to be able to confidently tell him I was sure that the joints were damaged so I was able to separate out and treat one of several problems. In my case, that made an enormous difference to my overall wellbeing.

After playing with the free version (which limits you to reports on the ten most recent entries – not much use if you make multiple entries to reflect different types of pain in different parts of the body and non-pain events), I decided it was worth the £3 to download it. The fact that using an app feels cooler (and has a familiar time recording style feel to my solicitor brain) made the whole thing seem like less of a hassle.

If you’re diagnosed, have stable symptoms and a stable drug regime, I don’t personally see much point in keeping a pain diary. Once you know your limits and what it takes to minimise the pain, it’s just a case of living with them for me but if you’re going to use one, I’d recommend an app. I haven’t updated the one I used lately so I don’t know if it’s developed any niggles but it’s definitely worth giving the free version a go.

“You talk about it”

In his recent Conference speech Ed Miliband said that, as a country, we’re failing people who suffer from mental illness. I agree. I’ve even written about it. In saying we shouldn’t be afraid to talk about mental illness, though, Miliband said
“if you’ve got a bad back or you’re suffering from cancer you talk about it.”
It was said with the best of intentions towards people suffering from mental illness but the failure to distinguish between intermittent and chronic back pain indicates either a lack of understanding of or indifference to chronic back pain: how much stigma surrounds it; how uncomfortable it can make other people; what it’s like to be called lazy just because other people can’t experience what we’re experiencing. It’s hard to talk about it (hard to blog about it too but I think it matters enough to do it sometimes).

People with chronic back pain (and other forms of chronic pain) are often expected to talk about things we don’t actually want to talk about and to answer any question anyone asks about it*. That includes situations where it’s not just uncomfortable to refuse – when an interviewer or boss asks, even if they’ve got no right to, what do we do? Sometimes I wish I had rheumatoid arthritis, just because conversations would be done with so much more quickly if I had a two word easily recognisable answer. But I don’t. I have a nearly a decade of absolutely non-stop pain which has spread as the musculoskeletal problems have, and another decade before that where I was in pain for at least part of every day. Over half a lifetime of doing some things differently and not doing other things at all, of well meaning but often misguided interest and advice from some people, suspicion and accusations from others. When it comes to work and doctors I still feel particularly defensive as a result of past experiences.

Even when I’d often rather not answer at all, I try to be straight forward when I answer people’s questions, although they’d probably be amazed at how much I’m not telling them. I really don’t understand what compels so many people to ask. I’m not saying people are trying to make me feel bad. Most aren’t but, as I said, I had some really negative experiences in the past and talking about it without my hackles rising is hard. It’s not just that though. I really wish I could be defined by more than the fact that I’m in pain. My body is damaged. One part of my brain receives constant pain signals as a result. There’s so much more to me than that though and it’s frustrating to feel like what I can’t do is so often in the forefront of people’s minds. The great thing about clients is almost none of them know so I’m free of it when I talk to them.

What Miliband’s comment also fails to recognise is how often talking about it is a waste of time, how often we answer questions only to discover the other person wasn’t listening to a word of it or to receive the reply “I know just how you feel. I put my back out gardening on Saturday. It hurt like hell on Sunday”. For all the talk, it’s immensely difficult to get people to actually listen when we have to do things differently to manage a condition. Not to mention the fact that when people do listen it’s often with pity in their eyes and how humiliating that is.

He’s also failing to acknowledge that there are people who care about us and are emotionally hurt themselves by the idea of our living with pain day in day out, that those people might be overprotective and might not want to suggest doing things for fear of feeling responsible for causing us more pain (immediately or as a flare up). It’s so incredibly hard to talk openly about chronic pain with someone who cares, hard for them to understand that we decide to do things knowing they’ll cause more pain because it really is worth it to have a life worth living. It can be easier for us to pretend we’re not in as much pain as we are to protect them. For some people it’s also a matter of pride not to admit to the people they love that there are things things they can’t do any more so they don’t talk about it. They just keep on doing them and suffer in silence.

Does he know that these problems with communication are so common among people who suffer from chronic pain that it’s a requirement for patients at Addenbrookes pain clinic to attend seminars which include talks on handling other people’s attitudes and feelings and being assertive about managing pain. Does he also know how few holistic chronic pain clinics there are providing any help beyond steroid injections? What I would say if I was really going to talk completely honestly about it to someone else would be this:

“Accept it. Accept it rationally and emotionally. I’m in pain. I will be an hour from now, a day from now, a week, a year, a decade. Whatever you imagine that feels like, you’re probably wrong so it’s better not to try. Trust my judgement. I know what I need to do to manage it. I know it will fluctuate through the day and why. I know the things which make it significantly worse. I know what to avoid and how to minimise the impact when I can’t or choose not to avoid those things. Sometimes I’ll ask for help but often I’ll be proud and stubborn about doing the little things for myself. Trust me. The amount of extra pain they cause isn’t worth trying to stop me. If I need to, I will ask. I really will. I know when it’s worth a significant increase in pain for a few hours or days to do something that’s important to me. Some of those are trivial things. Some are huge but it’s my decision to do them. Just accept it all because if you don’t, you’ll never really know the rest of me.”

I never do say it though.

It was just one sentence in his speech but Miliband, inadvertently I assume, dismissed the problems people like me face. We don’t often talk about these problems with non-pain sufferers. If he wants to know how people with chronic pain really feel he should try visiting a forum full of chronic pain sufferers, all looking for advice and understanding. It might be easy to talk about an occasional “bad back” but believe me, it really isn’t easy to talk about chronic back pain.

* If you’re one of the people who’s asked me questions as a result of reading something about the pain on my blog or Twitter, I’ve made a conscious choice to talk about it here/there and by extension to talk about it with you.

Benefits Britain

I got quite upset watching Benefits Britain last night and reading the comments about it on Twitter. So many people on Twitter were calling Karen a lazy scrounger. Nobody could stand her. Nor could I but that doesn’t mean I think she’s faking. There was a lot of sympathy for Melvyn and Craig but I saw none for Karen outside the WOW circle. I have chronic pain and even I had precious little sympathy for her because she was so whiny and I just didn’t like her (I appreciate she has several conditions but I’m going to focus on chronic pain here for obvious reasons). I felt let down by Channel 4’s choice of person to represent invisible disabilities. It seems people saw Karen as ignoble and obnoxious. She wasn’t bearing the conditions she has with “quiet dignity”. There’s no law saying people with disabilities have to be likeable though. It’s not a condition of entitlement to benefits either. It’s like the convention that people diagnosed with cancer suddenly become angels on the day they’re diagnosed. Two words: Lance Armstrong. It often seems like the public wants disabled people it can admire and pity in equal measure. People want heroes overcoming all odds, like Paralympians. They want Tiny Tim. But, when all’s said and done, disabled people are just people: good, bad, indifferent, imperfect people.

Karen was criticised for her answers during the work assessment, particularly for saying it hurt to lift a potato. Only Karen knows the truth of what hurts and how much. Not Twitter, not me. Watching Karen, I understood where her responses could be coming from. It’s hard to answer questions in an assessment when you have chronic pain. Many people with chronic pain can perform a lot of different actions once, on the day, but if they do it without giving feedback that it hurts or that they couldn’t do it repeatedly they run the risk the assessor will note that they’re always capable of doing it when the reality is that they might have a flare up tomorrow from doing it once and might cause a long term deterioration in their condition if they tried to do it regularly.

I believe Karen’s report that the pain increased when she picked up the potato – she pointed to the outside of her arm when she said it and I get increased pain from even lightweight lifting there too, although it’s a small and fleeting increase. If I thought her response was excessive at all, it was because the rules of the game say it’s unwise to remark on an increase in pain for such a minor action, assuming her increase in pain was relatively small. Doing so runs the risk that the assessor (whether a pure medical assessment or DWP one) will say you’re exaggerating and/or affected by psychosocial issues. Exaggeration is what viewers tweeting negatively apparently thought. Karen didn’t say it hurt a lot, just that it hurt, but that was enough to generate a lot of negative tweets.

I don’t know what happened to Karen before she was diagnosed with the conditions she has. Maybe it was a smooth ride from initial appointment to diagnosis. Maybe it was a pitched battle. I suspect that at some point it was a pitched battle because I’ve seen the frustration she exhibited over not being believed before. People suffering from chronic pain have to walk a path through the healthcare system but it sometimes seems like an invisible path. Say too little and you don’t really need help. Say too much and a diagnosis of depression is as likely as tests to find a physical cause for the pain. I’ve never had that happen to me but I spent over three years under one particular GP who seemed to think that I was too fragile a flower for the legal profession, that the pain was all in my head and induced by stress, while throughout that time a disc causing debilitating pain was growing ever more (as the surgeon later put it) rotten and my muscles were being put under strain, forced to compensate, in ways I haven’t recovered from yet and may not ever. I can see judgements being made by doctors on an person who comes off as abrasively as Karen and I can see her becoming more and more abrasive as a result.

If she’s defensive, even allowing for the possibility she might always have been unlikeable, it may be because she’s been made to feel like a liar so many times that she can’t help it. I don’t have to like her to understand it because I’ve been through the “I can’t fucking win” feeling. In one mind boggling case, an insurer’s assessment concluded that the surgeon who diagnosed a degenerative disc was just a trigger happy scalpel jockey who enjoyed cutting people up way too much for his diagnosis to be trusted. I paraphrase, but only barely. The surgeon was absolutely livid.

If Karen has been on benefits for some time, this could also be relevant to how she answers. When I made my first Incapacity Benefit claim I rang for guidance on completing the form because some of my symptoms fluctuate. The questions were similar to what Karen was asked, with multiple choice answers. I was quite clearly told, “tell us how it is on your worst days, not how it is today.” I don’t know what the DWP currently says but that’s the rule a long term recipient of Incapacity Benefit would be used to.

Among the tweets were some saying Karen was physically capable of doing a desk job involving typing if it wasn’t for her fake nails. I’m not going to get into how she spends her money but being in pain all the time can drag you down and it’s not controversial to say,  “find pleasure in the small things.” It’s a topic you might find on chronic pain forums and my pain clinic says to find things which make you happy. The small things can take many forms. Mine include star gazing, watching the wildlife and my cats but there’s another one that makes me think maybe this is why Karen has such cheerful nails. I mentioned in my last post I usually pick clothes to wear which reflect or enhance my own happiness. I started doing that after surgery, with a dazzling and mood lightening array of different coloured vests and pj bottoms.  Rather than carping at Karen, could we consider the possibility that she deserves one thing in her daily life that takes her mind off the pain in the moment she looks at her brightly painted nails?

One of the factors taken into consideration when determining if a person’s pain is “all in their head” or exacerbated by psychosocial issues is their appearance. Someone who makes no effort could have it held against them by an assessor (even the underwear you wear gets judged. Plain cotton is the best way to go. That’s not just personal opinion: I’ve read academic papers on the subject…on psychosocial issues, not undies generally!). In a medical context, bright multi-coloured fingernails could suggest someone who is not just making an effort but who has a sunnier nature than the stress of a medical appointment might display. When it comes to work assessments, this is another no-win situation though. Make too little effort and the same negative conclusions could be drawn. Make too great an effort and, just like the viewers who tweeted on this, the assessor could take it as a sign you’re less impaired than you’ve said in your forms.

Speaking of appearance, the “potato incident” suggested something about her appearance to me. Styling my hair hurts a lot in that part of the arm and in my shoulder. I used to hate my curls and only learned to love them after I realised by blow drying I was putting myself through unnecessary strain. Now I only blow dry my fringe (which, again, I love now but only had put in last summer after my hair temporarily thinned after a large number of steroid injections were administered in one go). It hurts even to do that. Often even lifting my arms to put my hair in a ponytail hurts. I think about Karen’s cornrows and wonder if she’d always have chosen them, whether she’s happier with them than if she was still able to tame her own (probably much tighter) curls (if she did before), whether she’s come to terms with losing a measure of control over her own appearance.

Back to the question of her ability to do a sedentary typing job. A reminder in case anyone reading this is new. I do work. I work part time. It hurts like hell every single working day. It hurt like hell to write this on my mobile even though I wrote it in chunks. I didn’t catch which part(s) of Karen’s back are affected because I missed the start of the programme, although that one little mention of pain in her arm that provoked so much fury suggests to me that typing could be out of the question. The chronic nature of her pain is also relevant. Doctors now know that, regardless of what the underlying cause of chronic pain is, pain begets pain. I’ve been told several times that by living in a daily “pattern of pain” where I peak and trough throughout each day of my normal working life instead of having the more normal non-pattern of good days and bad days (flare ups), I’m risking making my body’s ability to process pain worse as well as risking joints and muscles. That’s what Twitter (and the Daily Mail, of course) could be demanding Karen should do. But then, I didn’t see Channel 4 explain to viewers what strain different types of work would put on someone like Karen by modern medical standards or how chronic pain itself affects her body. Did I miss it? Channel 4 got the “money shot” of her refusing to do the work experience they were offering. In the context of the show, I thought she made the wrong choice. It’s one day. She’d probably have a flare up afterwards but it’d settle down again. That’s not to say she’s fit to work in the real world, just that I wish she’d stopped to think about the image she was putting out there.

Channel 4, you let us down. You hurt me. It’s your fault if people with invisible disabilities felt like Twitter was rounding on us during and after your programme. It’s your fault for not acknowledging prejudices and ensuring you had three people with similar personalities. It’s your fault for casting a wicked witch for dramatic effect. You know what, Channel 4? I hate you a little for that. I really do. There is one thing Channel 4 could do now to help the people it hurt by broadcasting this. Presumably it verified Karen’s medical conditions before making the show and verified their impact on her. It would be the sensible thing to have done. If it did, it should make a statement to that effect on the news and both before and after next week’s programme.

For more on perceptions of people with invisible disabilities, I’d (not very humbly) recommend Looking Good: Invisible Disabilities where I picked out quotes from a study on the subject.

The programme mentioned rates of employment of disabled people in 1949 and today. The high rate of employment in 1949 wouldn’t have included Karen. For a detailed review of disability discrimination in the jobs market today I would (even less humbly) recommend How many elephants can you get in the DWP where I reported on the avalanche of evidence I found on the scale of disability discrimination and the fact that the Government isn’t doing enough to change things.

Alternatives to an alternative therapy

At some point, I expect everyone who suffers from chronic pain is told to meditate. Meditation doesn’t come easily to everyone and I’m one of those people. I don’t switch off easily. The closest I come to it’s while swimming. When I got to the Pain Clinic at Addenbrookes, they told me to meditate. It wasn’t the first time I’d heard it and I’d never had much luck before but the idea behind it is that stress causes a chemical chain reaction which makes the pain worse although to be honest, I’ve always thought there are different types of stress and some – the kind that drive me at work – are positive stresses that don’t affect the pain. The deadlines, client juggling etc. They’re the rush. That said, negative stress, the genuinely nasty kind of stress definitely does make me feel pain more severely when it happens. It just isn’t a day to day problem There’s also the physical aspect of releasing muscles though. Tight muscles contribute a huge amount of my pain so it’s worth trying to ease that even if I’m not stressed.

Fair enough. I tried. I downloaded the meditation MP3 they recommended. I thought some more and downloaded an hour of waves lapping against the shore (real waves make me sleepy and it was cheap at under $1 – you can get apps with similar sounds for smart phones). I still couldn’t stay focussed and stick to their routine though. In fact, every time I tried to meditate their way, I tried too hard and got stressed about failing. Catch 22. The natural sounds do help my brain to settle down but as soon as I tried to tense and relax individual muscles it all started going wrong. I found it hard to isolate individual muscles to do this so I got frustrated and it was all but impossible to hear external noise and dismiss it. I’m supposed to hear the fridge gurgling, doors slamming etc and tune it out. No luck. On top of that, I couldn’t control my breathing. I do controlled breathing for pilates but couldn’t do the deep meditative breathing they wanted. Again, the more stressed I got, the more jerky my breathing became.

I was pretty anxious when I went back to the pain clinic. I didn’t like admitting failure and was worried they’d think I just wasn’t trying because I’ve seen attitudes like that before. The nurse was really good though. She acknowledged some people just find meditation hard and seemed to understand the concept that, after a while, you can put so much pressure on yourself to do it “their” way that you’re actually making things worse. She even agreed that I have a fairly “type A” personality and that it’s not surprising that I’d find it hard. (Oi. You at the back. Stop snickering at the word “fairly”.) The nurse said that they want people to try but, if it doesn’t work for them, all they want is for people to just spend some time each day relaxing. That can include listening to music, reading a book or stroking a pet (presumably one who doesn’t stick her claws in your legs and stomp on your bladder). Anything which doesn’t cause stress. I can manage all of these! Although I have the two cats, it’s my parents’ younger dog Meris who can make me start nodding off just from stroking her, even if I don’t see her enough to be an official part of my routine:


The nurse went further and said they’d recently found evidence that meditation’s hard for a lot of people. They want everyone to give it a chance (saying it’s stupid and refusing point blank isn’t allowed) but they haven’t yet found a way to make it work for everyone. I told her two things which helped me and, as she seemed interested, I’ll add them here. One is the natural sounds. As long as I don’t actively try to meditate, the seashore mp3 makes me feel pretty drowsy and heavy (that particular sound’s not for everyone but you know what I mean). The other is rescue remedy’s night-time tablets. When I explained they cut my brain’s incessant chatter, she made a note to try them herself!

We talked about breathing too. They wanted me to do diaphragmatic breathing, which isn’t the same thing as pilates breathing. Again, she had an alternative for me. Sing. Yep, that’s right. Sing. It makes perfect sense when you think about it but it hadn’t occurred to me before. The best part is I don’t have to find time to do it. I just put music I like on while I’m on the exercise bike, ironing, making dinner. Whatever.

It makes a real change to find people who think flexibly about what’s going to work for individual patients in the context of conditions which cause chronic pain. There aren’t many proper pain clinics around so it seems right to share what my really good one told me.

Since I got landed with a long commute, I’ve been doing my singing in the car. This is my current set of songs. They don’t just make me sing, as it happens. They’re the kind of songs I’m talking about if I tweet I caught myself dancing in public, a habit I’m not really sure I want to break myself of.

Finding some highs in the low

Having chronic pain and being unemployed is complicated. The actual job search is demoralising, yes, but there’s more to it than that. It’s realising that, without work draining so much of my energy, I’m eating more healthily, exercising more (re-gaining important ground in terms of core strength) and losing weight (which sounds like vanity but every little counts on a tiny, broken musculoskeletal structure like mine). It’s having the energy to do a bit of housework. It’s also realising I’d better job search from my desk or I will lose vital muscle support that I’ll need to keep me upright in a new job and that I have to stop seeing my osteopath until I have a new salary though. Most of all, it’s being in less pain. Even though the negative stress of being out of work makes the pain I’m in more intense, my activities are better for me so the negative stress effect isn’t outweighing them. (Incidentally, I define positive stress as the day to day high of dealing with the normal pressures and deadlines of being a solicitor. I thrive on that so it doesn’t increase the pain. If anything, it distracts me from it, although continuously ignoring the rising tide of pain in this way is dangerous and categorically not a recommended way of dealing with chronic pain.) Even taking the time to bask in the sunshine is a part of my physical recuperation. The long winter was hell on me, wave after wave of spasms running through the muscles in my back, neck and shoulders in response to the cold. When I’m in the sun and the heat seeps into my bones, my muscles are as relaxed, and as pain-free as a result, as they ever get. Less pain. More energy. I’m still in pain but there’s less of it. I’m getting glimpse of a better quality of life, in many respects. It’s going to take mental strength to start a new job when I eventually find one because these things are an absolute bloody luxury but that’s what I want, as well as need. I want to work. I want to use the skills which are both innate and learned. I want (and the doctors have made it clear this really can’t be negotiable), a better quality of life but I can’t actually cope mentally or emotionally with so much mental inactivity. The lack of income scares me but the lack of actual work is what is ultimately driving me just as much. My body is thankful for the break but my brain really needs more now, please.