Throughout my adult life, I have strongly identified with some aspects of Travis Bickle, the character played by Robert De Niro in Taxi Driver, such as the loneliness he describes in this clip.
As a result of my HS, I used to frequently cancel social appointments with friends at the last minute, which was not exactly conducive to maintaining friendships. Understandably over time, these social invitations dried up. Due to multiple disease and surgical scars, my body image has been affected by HS and consequently I have shied away from intimacy with others. For these and other reasons, I have struggled to make connections and develop relations with others and at times feel lonely. I always felt my loneliness was strongly connected to my HS, and there is some scientific research indicating a link between HS and loneliness.
Esmann and Jemec (2011) found that HS promotes isolation due to the fear of stigmatisation experienced by those with HS. This research was done by interviewing 12 HS patients and most of those interviewed said that they felt alone with their HS and were anxious to know if others experienced similar feelings.
Kouris et al. (2016) used the UCLA Loneliness Scale (a commonly used measure of loneliness in the medical literature) to assess loneliness in 94 HS patients and compared the results with 94 healthy controls. They found a significant difference between the loneliness in those with HS than in those without HS. Furthermore, the researchers found that the extent of loneliness in HS patients was significantly linked to the clinical severity of HS (as measured by HS stage).
So why is loneliness significant? In addition to obvious mental and emotional effects, loneliness can also have many negative effects on physical health. For instance, loneliness has been linked to a 50% increase in premature death, increased blood pressure, higher cholesterol levels, depression and if that wasn’t enough, decreases in cognitive abilities and an increased risk of Alzheimer’s disease (Magen 2018).
What can the HS patient do to combat feelings of loneliness? Magen (2018) and Remes (2018) suggest some useful and practical ways to beat loneliness. In this connected world social media enables linking in with others in similar situations and as Esmann and Jemec (2011) report, it is important for many HS patients to know they are not alone in their experiences in enduring the condition. There has been a proliferation of online HS support groups in recent years and while not for everyone, these may be beneficial to some. You could always join a HS support group in your local town/city. If there isn’t one, consider starting one. I have had the good fortune to meet many others with HS and these meetings have been the most therapeutic experiences I have had for my HS. It can be beneficial to talk about HS with others who understand.
Do you feel lonely as a result of your HS? What do you do to tackle these feelings?
The Loneliness One Dare Not Sound
Emily Dickenson (1830–1886)
The Loneliness One dare not sound—
And would as soon surmise
As in its Grave go plumbing
To ascertain the size—
The Loneliness whose worst alarm
Is lest itself should see—
And perish from before itself
For just a scrutiny—
The Horror not to be surveyed—
But skirted in the Dark—
With Consciousness suspended—
And Being under Lock—
I fear me this—is Loneliness—
The Maker of the soul
Its Caverns and its Corridors
Esmann, S., and Jemec, G.B.E. (2011) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study’, Acta Derm Venereol.,91: 328–332, [online], available at: doi: 10.2340/00015555-1082, [accessed 06 Apr 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’, Dematol., 232:687–691, [online], available at: doi: 10.1159/000453355 [accessed 06 Apr 2019].
Magen, J. (2018) ‘This is why loneliness is bad for your health’, [online], available at: https://www.weforum.org/agenda/2018/02/loneliness-is-bad-for-your-health, [accessed 06 Apr 2019].
Remes, O. (2018) ‘Here’s what we can do to beat loneliness’, [online], available at: https://www.weforum.org/agenda/2018/07/loneliness-is-contagious-and-heres-how-to-beat-it, [accessed 06 Apr 2019].
4 thoughts on “On Loneliness”
Hello there. I have HS, Elhers Danslos Syndrome and POTS. Im also Autistic. Recent publications have estimated the average autistic’s lifespan to be about 35 years due to murder by parents/caretakers, comorbid illnesses, and suicide. HS and Autism together is like vinegar and baking soda. Both my neurology and my skin are at odds with each other. I have a brain that is wired to persevere on certain images and thoughts, including trauma. HS brings with it much trauma. It is hard to be social when my mind is ripped into 1000 different, smaller minds. Loneliness is not something I feel too often, maybe because of these multiple selves. It os hard to sort out what is mental illness from what is a spiritual evolution as a result of my suffering. Now, isolation is something a bit unlike loneliness, yet gets grouped with it. Isolation is something that humans do to either cut others out of a social network, or to remove themselves from pain. As an autistic Im ostracized, isolated by bullies. As someone with HS, I isolate others who increase my pain. Toxic, draining people have caused HS flares to erupt in my body by being in their presence.
Imagine the insult:
“I cant bear being in your presence– the mere sight of you plagues me with festering pustules”
(I imagine it, and it’s , one of few thoughts on the matter that makes me chuckle)