Hidden impairments

Introverted photo I worked in the field of disability arts/arts and disability from around 1996 to 2008 and was part of the original Disability Arts Online team, during which time I came to terms with my own hidden impairments, which are always present, come and go in intensity, and are probably connected in ways I have yet to fathom. By now, I’m used to it all, and have learnt to live with things as they are. I’m no longer involved in any socio-political movements, neither do I use my art to express anything about impairment—I don’t want it to be the focus of what I do.

Chronic Lymphocytic Leukaemia (CLL) and AIHA

This is an incurable but treatable form of Leukaemia or blood cancer where my body produces too many Lymphocytes (kind of white blood cell) that aren’t properly formed. I was diagnosed in 2012, and am currently in stage A which needs no treatment. Symptoms come and go, but are mainly: extreme tiredness, shortness of breath, exhaustion and irregular body temperature. You can read more about CLL on the Macmillan website. If you have CLL, FYI at diagnosis I was FISH chromosome deletion 13q14 in 49% of cells, rGHy2.05 90% homology to germline.

Around 7% of CLL patients also develop Autoimmune Haemolytic Anaemia (AIHA), and I have that too—at its worst, the fatigue is unimaginable! Treatment with steroids has been an interesting journey. I’ve had two chemo sessions over 2 years with Rituximab, which has kept it in check.

M.E. or chronic fatigue syndrome (CFS)

Now somewhat eclipsed by the CLL, this is like a permanent ‘post-viral fatigue’, which I’ve had since around 1991-2 with no real change: muscle aches, tiredness, low energy, memory loss and concentration voids. Sometimes gravity feels stronger, stairs steeper. I get mentally fuzzy or overloaded and need to rest or work in isolation, or else find it hard to concentrate without feeling extremely stressed. I sometimes forget important things. Most people notice nothing, because I’ve become expert at managing my limited resources - I only ask if I want to walk slower or rest, and don’t go out when I feel drained. Adreneline gets me by at other times, but I pay the price afterwards. I had lots of tests which came to very little, but a student doctor tentatively recognised the original virus as Parvo, the human version of the canine disease, which (I surmise) caused a chronic disruption of my stress-weakened immune system (sometimes, I even dream I’m a dog). In late 2008 I was treated for a vitamin D deficiency, which exaggerated the symptoms severely. I was also highly intolerant of cow dairy and (then) using soya milk, so changed my diet—goat’s milk/cheese/yoghurt and oat milk—and now feel better, but the underlying fatigue remains although all the hay fever I once had has cleared up! Friends and a former partner with chronic fatigue were really helpful. The remarkable Programmer’s Stone (philosophical site on programming and culture) has some interesting ideas about the high incidence of both CFS and ADD (Attention Deficit Disorder) in programmers (the wonderful Ted Nelson, who envisioned the hyperlink, has lived with ADD and even has trouble maintaining his own computers); and about contributory factors in CFS. CFS causes are still under research, but some findings (New Scientist No2241 3/6/2000) suggest causes in a dis-synchrony between the usually harmonised 24-hour sleep/wake signals emitted by temperature and hormonal cycles. Other more recent research is pointing to a deficiency in Choline, which I don’t yet quite understand. Like the immune system, it’s an issue of some complexity.

Subjective mental states

Checkout slip reading: my name is David In 1990, when I first realised I needed help to maintain a coherent personality (as I then saw it), I avoided Public Health Service therapy and psychoactive drugs (having watched friends go through the process), using instead a series of counsellors, initially via a free public service. The first committed suicide (nothing to do with me, I was assured). The second was a real treasure (with a slight alchohol problem) and tolerated me occasionally sitting in almost complete silence (or asleep) for two of the four years I spent with him. He also understood my homespun ‘spirituality’. The third went through a marriage break-up (what is it with counsellors?) which I irrationally used as a reason to stop counselling. But through their continuing support I learned to live with my smörgasbord of past and present experiences, including teenage socialphobia, periodic anxiety, obsession-compulsion (symmetry, collecting and geometrical perfectionism), and unusual or extreme subjective states, including out-of-body experiences, extreme lucidity and its opposite, for which there is no name, although ‘melancholy’ comes close. You can read some poetry about melancholy (older but up here since 2000) - thoughtful not depressing, which is what melancholy is actually about. Despite all this, I’m often positive, content and focussed, which contradicts one of the common misconceptions about impairments. I’ve been very lucky to have a series of wonderful counsellors.

During the 2020-21 lockdown my tendency towards up/down mood swings became really exaggerated, and the steroids taken while building up to Rituxomab treatment for the AIHA seem to have caused a few psychological shifts in my mental experiences; although life events have undoubtedly contributed. It’s becoming a positive learning experience, but it’s taken a few years to get to that point.

I’ve arranged some objects I’ve collected as a page of small things (new window) that gives a personal account of the impact of these mental states on my life. Why go against web access guidelines by opening things in separate windows? I suppose I like the idea of personal stuff living on self-contained web ‘islands’ with no obvious way back (except the errr… ‘back button’). Anyway, if you’ve got this far you’re probably interested enough to take a look.

Social or medical?

If you’re new to disability issues or immediately think only of wheelchairs, read a concise definition of the social model of disability from the 1999 bioMatrix exhibition pages (opens a new window).

Andy Hayes’ thoughtful page for people with hidden impairments is sadly no longer available. He made some valuable personal observations about the current failure of the disability rights version of the social model to meet the needs of people with hidden impairments:
“the social model of disability … is focusing away from medical terminology. People with hidden impairments often want to use medical reference[s] to show society that they have a genuine difficulty.”

Disabled? In the Arts?

If you’re disabled and involved in the arts in the UK, visit Disability Arts Online (dao) and join the mailing list to see what other practitioners are doing, and to keep up with the latest creative work and discussions.

CLL links

I use the CLL Support Association UK, and CLL America from Patient Power, both on Health Unlocked, and can recommend them highly!

CFS links is sadly now an AI-generated re-publishing portal, but used to contain Chronic fatigue syndrome information for medical doctors (US).

The Medical Journal of Australia has articles and research on CFS. Here are some quotes from the site:
“CFS is a sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. Resist the temptation of a hurried, superficial evaluation.”
-- Thomas English, MD, JAMA 1991; 8: 265

“My cognitive difficulties were frightening and confusing… easily. I mixed up words and I couldn’t think of phrases I wanted to use. My concentration span was extremely short and my mathematical ability almost disappeared.”
-- a person with CFS

Mental health links

hi2u hidden impairments site (UK) - "ADHD, Aspergers Syndrome, Dyslexia and similar neurological differences along with any other type of hidden impairment".

National Institute of Mental Health (US)
An extensive ‘orthodox’ site with a valuable index of individual mental conditions and links to informative guides about them in downloadable PDF or online format.

the Obsessive-Compulsive Foundation’s (US) page on Obsessive-Compulsive Disorder

red : will : life : point : dominant : primary : things...
blue : love : consciousness : line : tonic : secondary : come in...
green : activity : form : plane : third : tertiary : threes...