Words on Living with Pain

A Fragment.
(Not a definitive description. Not even a drop in the ocean of the different experiences of just one person.)

In my head an awareness of pain sits like static from across the room. It hums at me, irksome and untouchable, just off kilter enough to make me feel irritable. But I am used to this and concentration on other things allows me to forget it is there. Stopping reminds me, getting tired reminds me, I remind me.
Sometimes the buzz of static grows bluebottles. Extra whining buzzes on top of the dull hum. They swoop closer or settle silent only to be raised up by something unexpected. I cannot see the cause of the bluebottles, I don’t know why the short bursts of extra pain appear or settle down again. I cannot open the window for them or squash them, I must be quiet and hope they fall asleep or find their own way out and leave just me and the static.

Bad days are when the white noise of pain that makes it so hard to concentrate gets so loud I can barely hear people’s words or complete simple tasks. Bad days are when I can’t decide if I need utter isolation to practice breathing or to do everything at once to try and shut it out until I am so exhausted I can sleep. Bad days are snappy, weepy, untouchable, unpredictable, pacing-the-floor, staring-at-the walls days.
But Good days, well I like good days. On good days painkillers work, on good days birdsong is more distracting than the static, on good days I am strong enough.

[Incidentally this description is equally valid for Chronic physical pain and for the mental pain of depression]


Disability: Other

Can I do that? Could I do that with the right support?

Have you seen the box on the equal opportunities forms… the one for ‘other’ disabilities; disabilities that aren’t visual, auditory or mobility related? Some forms offer you the chance to specify mental health difficulties (sometimes these are linked to learning difficulties) and some offer you the chance to specify an invisible disability; but what does any of that mean practically?

By UK law people who are disabled are protected against discrimation and in some cases entitled to help, support and/or benefits – but what can actually be done to achieve these aims?

Lets start with the partially visible – the invisible illness that manifests in a medically clear way (in so far as anything could be described as medically clear). The obvious examples are epilepsy and diabetes, chronic, serious and potentially life-threatening, but treatable and variable from day-to-day :- I say obvious, its not like you can necessarily tell that someone has one of these conditions just by looking at them and more importantly if they haven’t touched someone close to you perhaps you never think about them. However, they are widespread – chances are someone you know has one of these conditions, no actually the odds are more that several people you know live with these things everyday (and no I can’t be bothered to find the stats. You are on the internet, look them up yourself!). Many people with either diabetes or epilepsy would shudder to think of themselves as disabled and yet the effects on their lives can be massive and people paying attention to their circumstances can make a world of difference. I’m not talking about benefits for every epileptic, but I am talking about public transport concessions for those who are barred from driving. I don’t think all diabetics should be kept at home but private, clean spaces for injections and clear routines are basic needs. Sometimes these things are available but more often than is acceptable they are difficult to obtain – where is the basic primary school education that teaches everyone to recognise these potential needs and deal with bad days?

Then what about the more subtle ..degenerative or chronic illness. From dealing with the intermittent and changing fatigue and numbness of an MS sufferer to regular treatment requirements for Crohn’s? The illnesses are widely recognised medically but the symptom fluctations can be difficult to measure externally or may be dormant for long periods of time but then require extensive intervention. As an employer or as a friend what daily steps and considerations should you take? Can we begin to learn not to take ‘How are you?’ for granted, Can we begin to realise that a bad day or a bad year isn’t all in the head?

But I can go further, much further, what do we do about the ‘malingerers’; those ne’erdowells with mental health problems or chronic fatigue or pain whose ‘issues’ can’t be agreed on let alone measured and whose wellness cannot always be improved or even necessarily maintained at a manageable level by measurable activities, what support can be offered?

The internet offers a wonderful open letter to those who come into contact with those suffering from a chronic invisible illness and there are more and more community support groups on the internet but these are not a subsitute for trying to get what you want out of life and learning that accepting limitations is not the same as not trying to be the best you can. Living with something that others don’t recognise can be frustrating at best and is often demoralising. We need to keep on encouraging people to speak up and make their problems visible and to offer support as a society. But what can actually be done?

Here I must shift from the general to the personal.

Student support services know that they must provide support for those with a disability, including those with eg a mental health difficulty but they very often don’t know what that support might be. They leave it up to the student to suggest things that would be helpful for them – a worthy idea except that it is unlikely that the student has ever done anything like this before and one suffering from anxiety and depression might find it particularly hard to express what they need to achieve their best.

So what advice can I offer?

To be Continued