HS and Work

Love and work …. work and love, that’s all there is.

– Sigmund Freud

The older I get, the more I agree with this Freud quote. It is, in my opinion, the very essence of why we are — to love and to work. I believe that the ability to do both should be available to everyone. Yet these are inaccessible for many HS patients, with work in particular beyond reach. In this post, I look at some research that focusses on the effects of HS on work.

HS typically affects people in their late teens to the 40s i.e., during some of the most productive work years. Due to the chronic physical pain associated with HS, working in a physically demanding job can be beyond some people with HS. In addition, HS can lead to mental health problems such as anxiety and depression, further limiting the work roles available to many. HS is therefore associated with work disability.

Some research has examined just how much of an impact HS can have on the HS patient’s ability to work. Dr. Peter Theut Riis and colleagues looked at the unemployment rate in a group of 383 HS patients in Denmark and report the rate was approximately four times higher for those with HS (~25% unemployment rate), than in the background  population with an unemployment rate of 6% (Theut Riis et al., 2017). A similarly high rate of unemployment (21%) was reported in a study on 150 HS patients in Ireland, compared with a 6% unemployment rate in the general Irish population (Delany et al., 2018). In this study, a further ~10% were out of work due to temporary or permanent illness disability [the authors do not specify if illness disability was due to HS or was HS related]. HS can also impact those in employment with 50%–58% of employed HS patients missing work due to their HS; the mean number of HS-related sick days was 14.2– 33.6 workdays per year (Matusiak et al., 2010; Kluger et al., 2017). Matusiak and colleagues conducted a 2-year follow-up of HS patients in their study and found that 10% of the employed group lost their jobs due to an inability to perform their work duties properly and frequent absences from work. A further 23% reported that they had HS-related obstacles with promotion or advancement.

My own experiences reflect many of these research findings. About 10 years ago, I was in a very good job and was on the verge of a promotion to a senior role. However, over time HS took over and I was increasingly absent from work due to HS surgery and having to attend clinics for regular dressings of my HS surgery wounds. The job was very demanding, time-consuming, and stressful and having HS certainly wasn’t helping me fulfill my duties. Something had to give and the end result was me losing my job. While trying to find new employment, my HS worsened and I had many more HS surgeries which, together with the global economic recession of late 2008, made trying to find new work all the more difficult. I had reached a stage where performing the work I was trained to do became extremely difficult due to HS — I knew I was in trouble the day I found it excruciatingly painful to click a computer mouse! I became dependent (financially and otherwise) on help from family and was also reliant on the state for a time. This was not part of my grand plan and certainly wasn’t the reason I had worked so hard in my youth and early adulthood to get a good education and career. Over time, surgeries and medications began to make a difference and I set about re-training, pursuing further education, and developing new skills which enabled me to eventually find new employment in a job which allows me to work from home, if needs be.

I appreciate how fortunate I am to be in a position to relate a positive outcome to my HS story so far — there are many with HS who are struggling physically, mentally, socially, and financially, with the latter being exacerbated by the inability to find or maintain regular work suited to their abilities.

 

Digging

Seamus Heaney (1939–2013)

Between my finger and my thumb
The squat pen rests; snug as a gun.

Under my window, a clean rasping sound
When the spade sinks into gravelly ground:
My father, digging. I look down

Till his straining rump among the flowerbeds
Bends low, comes up twenty years away
Stooping in rhythm through potato drills
Where he was digging.

The coarse boot nestled on the lug, the shaft
Against the inside knee was levered firmly.
He rooted out tall tops, buried the bright edge deep
To scatter new potatoes that we picked,
Loving their cool hardness in our hands.

By God, the old man could handle a spade.
Just like his old man.

My grandfather cut more turf in a day
Than any other man on Toner’s bog.
Once I carried him milk in a bottle
Corked sloppily with paper. He straightened up
To drink it, then fell to right away
Nicking and slicing neatly, heaving sods
Over his shoulder, going down and down
For the good turf. Digging.

The cold smell of potato mould, the squelch and slap
Of soggy peat, the curt cuts of an edge
Through living roots awaken in my head.
But I’ve no spade to follow men like them.

Between my finger and my thumb
The squat pen rests.
I’ll dig with it.

 

References:

Delany, E., Gormley, G., Hughes, R., McCarthy, S., Kirthi, S., Markham, T., Tobin, A.-M., Murphy, M. and Kirby, B. (2018) ‘A cross-sectional epidemiological study of hidradenitis suppurativa in an Irish population (SHIP)’, JEADV, 32, 467–473, [online], available at: doi: 10.1111/jdv.14686, [accessed 19 Apr 2019].

Kluger, N., Ranta, M. and Serlachius, M. (2017) ‘The burden of hidradenitis suppurativa in a cohort of patients in southern Finland: a pilot study’, Skin Appendage Disord., 3:20–27, [online], available at: doi: 10.1159/000455236, [accessed 19 Apr 2019].

Matusiak, L., Bieniek, A. and Szepietowski, J.C. (2010) ‘Hidradenitis suppurativa
markedly decreases quality of life and professional activity’, J Am Acad Dermatol., 62:e701 [online], available at: doi: 10.1016/j.jaad.2009.09.021, [accessed 19 Apr 2019].

Theut Riis, P., Thorlacius.. L, Knudsen List, E. and Jemec, G.B.E. (2017) ‘A pilot study of unemployment in patients with hidradenitis suppurativa in Denmark’, Br J Dermatol., 176, 1083–1085, [online], available at: doi: 10.1111/bjd.14922, [accessed 19 Apr 2019].

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