The Shame of HS

The list of medical conditions associated with HS, or comorbidities as the medical community call them, continues to grow with further HS research. To list them all would be deadly dull, but to surmise they cover many key areas including the physical (e.g., pain), emotional (e.g., isolation, loneliness), mental (e.g., depression, anxiety), self-worth (e.g., impaired body image), sexual (e.g., sexual dysfunction, sexual distress), professional (e.g., work disability), and financial (e.g., poverty), to name just some. HS is insidious: if it doesn’t get at you directly (but it probably will), it can work its way into your life in many other ways. I have explored some of these themes in previous posts and hope, in time, to explore others as research uncovers new findings.

In this post I will explore a theme often read/heard about in association with HS, but to date has been one that has been relatively unexplored, and that theme is shame. This was prompted by research recently published in the British Journal of Dermatology (Keary et al., 2019). This research team, comprising psychologists and a dermatologist, explored some of the psychological factors underpinning the widely-reported impaired quality-of-life seen in many with HS. The research involved semi-structured 1.0–1.5 hour interviews with 12 HS patients (a relatively small number of participants), in which those enduring HS were questioned about their experiences of the condition and how it impacted their lives. Interview transcriptions were subsequently analysed for common themes.

Three main themes emerged from the research: shame, pain, and coping mechanisms. As I have explored pain previously, and will post about coping mechanisms in future, herein I will deal only with shame. Tellingly, all the study participants expressed disgust with their HS lesions and abscesses, and feared that others would react similarly if they saw the lesions and abscesses, leading to feelings of shame in the HS patients. One participant commented that:

[I’d be concerned] that they’d have the similar reaction, the disgust of it, and then pity, and then “why aren’t you doing anything about it?”

And another:

You see, the one thing you don’t want is somebody looking at you in disgust.

This shame gave rise to social isolation and withdrawal in many of the HS patients, who were fearful of their HS being seen in public. The feeling of shame was further compounded in those that were single. These HS patients were reluctant to show their bodies to prospective partners for fear that this may give rise to disgust in the other person and ultimately lead to rejection. HS typically occurs in the most intimate regions of the body, as outlined here.

Interestingly, the overweight study participants described their being overweight as another source of shame. Frequently, overweight HS patients are advised to lose weight by their physicians, which is sound advice but which can be an exceptionally difficult thing to do for the average person, never mind those who are experiencing chronic and intense physical pain. This advice only served to compound the feeling of shame of being overweight expressed by the participants. In addition, these patients felt that their physicians were being dismissive which unfortunately prompted some patients to want to disengage entirely from medical services.

This feeling of shame is something I can identify strongly with. My own HS history involves 20+ years of HS affecting the backside area; fortunately I was unable to see the lesions and could only see the blood- and pus-stained underwear and clothing. However, when I developed HS in the armpits, I found this exceptionally difficult to deal with physically, mentally, and emotionally: I looked on in horror as these gaping, weeping, and foul-smelling sores appeared on my body, which I described as an atrocity exhibition. I was disgusted by what I saw and feared that others would feel similarly. I chose/felt compelled to singledom and celibacy as a result. These feelings of shame intensified when I subsequently developed severe HS in the groin. Areas of the body that are meant to bring pleasure and joy were instead founts of pain, misery, and self-loathing. If I couldn’t bare to look at myself, how could I expect others not to be horrified? Furthermore, my HS smells terrible, and I know from talking to many others with HS that their lesions smell awful too. If I found my own smell repulsive, how could I expect to get physically close to others without evoking similar reactions? I know there is more to relationships than physical intimacy, but it is an important aspect when you are young and when in the initial stages of a romantic relationship. I must add that I have had surgeries since and that almost all of the old HS scars and lesions (and foul odour) are gone, replaced with surgical scars which fade with time. I feel a lot more confident these days, so much so that I regularly go swimming in a local public pool. However, this confidence has yet to translate over to the romance department – one step at a time and all that. But enough about me.

Feelings of shame are an acknowledgement that one has done something wrong (Heshmat 2015). But there is the rub with HS: HS patients have done nothing wrong! As HS advocate Cathryn Caulfield points out in this recent post:

HS is a disease and it’s nothing to be ashamed of.

Why then is it that many HS patients continue to feel ashamed? I can’t think of (m)any other conditions that trigger such feelings. I doubt there are (m)any, but I could be wrong. Shame is a dangerous emotion and is detrimental to overall well-being (Lamia 2011). It is concerning that the Keary et al. study finds shame to be so prevalent in the HS community (albeit in a very small sample size) and it is something that needs to be addressed.

Dr. Estella Keary and colleagues conclude their research by recommending psychological interventions for HS patients, and specifically for interventions that address feelings of shame. Many existing psychological services for other skin diseases are based on cognitive behavioural therapy, a therapy that helps patients manage their problems by modifying how they think and act, and Keary et al. suggest this could be applied to HS patients. They also advocate for compassion focused therapy, a form of cognitive behavioural therapy which encourages compassion towards the self. These calls are to be warmly welcomed as most existing medical services (in this part of the world at least) for HS patients try and address (some of) the physical symptoms only. As I wish to stress in these posts, and as the Keary et al. study (and other research) illustrates, HS can act on many different levels and is much more than a skin-deep condition. It is therefore critical that integrated and comprehensive medical approaches are used to manage and treat it.

 

References:

Heshmat, S. (2015) ‘5 factors that make you feel shame,’ Psychology Today, [online], available at: https://www.psychologytoday.com/us/blog/science-choice/201510/5-factors-make-you-feel-shame, [accessed 22 Jun 2019].

Keary, E., Hevey, D. and Tobin, A.M. (2019) ‘A qualitative analysis of psychological distress in hidradenitis suppurativa,’ British Journal of Dermatology, [online], available at: doi: 10.1111/bjd.18135, [accessed 22 Jun 2019].

Lamia, M.C. (2011), ‘Shame: a concealed, contagious, and dangerous emotion,’ Psychology Today,[online], available at: https://www.psychologytoday.com/us/blog/intense-emotions-and-strong-feelings/201104/shame-concealed-contagious-and-dangerous-emotion[accessed 22 Jun 2019] .