HS and Isolation

No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend’s or of thine own were: any man’s death diminishes me, because I am involved in mankind, and therefore never send to know for whom the bells tolls; it tolls for thee.

– John Donne, No Man Is An Island

I recently wrote a post about researchers investigating the links between HS and loneliness. Further research has probed the links between HS and isolation and in this post I look at this.

Isolation is often used in association with loneliness, and some use the term interchangeably, but there is a distinct difference. People can be isolated and not feel lonely; at the same time, people can be in the company of others, but feel lonely. Loneliness is a subjective term, something that a person feels and reflects the quality of a person’s relationships while isolation is an objective term reflecting the quantity of social contacts a person has.

Given that HS primarily affects intimate body regions and can disfigure the body, can have negative impacts on body image, can cause debilitating physical pain, work disability, and can negatively impact mental health (by being linked to depression and anxiety), researchers have begun examining if those with HS are socially isolated by having the disease. So just what does the research say about HS and isolation?

Esmann and Jemec (2011) were among the first to examine this and in interviews with 12 HS patients (a small number of participants as far as studies go), they concluded that having HS promotes social isolation due to the fear the HS patient has of stigmatisation, the latter related to fears of revealing the normally hidden HS scars and fears about involuntary release of the foul smell from the HS lesions many of those with HS experience.

In an exploratory study of coping strategies used by HS patients, Kirby et al. (2016) conducted interviews with 21 patients and found that social isolation was used as a means of coping with having HS. The authors categorised this as a “negative coping strategy”,  in contrast to “positive coping strategies” such as use of humour and social supports i.e., relying on family, friends, and so on, for help.

Kouris et al. (2016) assessed isolation in 94 HS patients and compared the results to 94 control patients (i.e., those without HS). They found that those with HS had statistically significant higher social isolation scores than the controls. Furthermore, these scores were linked to what HS Hurley stage the patients were at. Kouris and colleagues conclude that social isolation in HS patients is compounded by the fear patients have about reactions to the smell from discharging lesions. Furthermore, HS patients are likely to cancel social activities such as going out in public and sporting activities, leading to further social isolation. The researchers advocate psychosocial support measures for those with HS, such as patient support groups.

None of this research surprises me and I think the researchers are on the right track: I’ll admit to isolating myself as a means of dealing with my HS. Yes, as a youth I was afraid of how others might react to lesions and scars, so I avoided situations where this may be an issue, e.g., participating in team sports. With age and experience comes wisdom and nowadays, in my mid-forties, I regularly go swimming in a public pool and no longer care much about what others may think in that regard. People can accept me or not for what I am – no big deal either way. For a long time I was obsessed by how others might react to the bad smell coming from my weeping wounds and I avoided situations where this might be an issue. I gave up on intimate relationships some years ago for fear of being rejected because of my disease and surgical scars. A cop out I admit but that is what I thought best at the time.

Do you use social isolation as a means of dealing with your HS?

Do you use HS support groups to remain connected?

 

 

References:

Esmann, S. and Jemec, G.B. (2011) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study,’ Acta Derm Venereol., 91, 328–332, [online], available at: doi: 10.2340/00015555-1082, [accessed 19 May 2019].

Kirby, J.S., Sisic, M. and Tan, J. (2016) ‘Exploring coping strategies for patients with hidradenitis suppurativa,’ JAMA Dermatol., 152, 1166–1167, [online], available at: doi: 10.1001/jamadermatol.2016.1942, [accessed 19 May 2019].

Kouris, A., Platsidaki, E., Christodoulou, C., Efstathiou, V., Dessinioti, C., Tzanetakou, V., Korkoliakou, P., Zisimou, C., Antoniou, C. and Kontochristopoulos, G. (2016) ‘Quality of life and psychosocial implications in patients with hidradenitis suppurativa,’ Dermatol., 232, 687–691, [online], available at: doi: 10.1159/000453355, [accessed 19 May 2019].