Resilience and the HS Patient

 

Camus

 

I distinctly recall first reading the above Camus quote, thinking the great author had somehow found his way ‘under my skin’. I am sure this popular quote means a lot of things to different people; for me, it neatly describes my HS journey, reflecting the ongoing search to find the inner resolve to continue against the Hydra-headed challenges that HS can present. In other words, finding ‘resilience’. Some recent research suggests that resilience may indeed help those with HS.

 

What is Resilience?

Simply put, resilience is the ability to adapt or change. Merriam Webster define it as the ability to recover from or adapt to change to misfortune. HS has been associated with depression, and resilience can help lessen the impact of depression. This begs the question of whether resilience could help with HS.

 

Why is resilience important?

Life can deal each and every one of us some cruel hands. The arts frequently try and deal with this, as illustrated widely in poetry, film, literature, and song below:

From the movie Léon the Professional (1994; Luc Besson):

Or, as The Great Bard put it:

Nativity, once in the main of light,
Crawls to maturity, wherewith being crown’d,
Crooked eclipses ‘gainst his glory fight,
And Time that gave doth now his gift confound.
Time doth transfix the flourish set on youth
And delves the parallels in beauty’s brow,
Feeds on the rarities of nature’s truth,
And nothing stands but for his scythe to mow:

– William Shakespeare; Extract from Sonnet No. 60.

 

From the movie The Departed (2006; Martin Scorsese):

 

He stood at the window of the empty cafe and watched the activites in the square and he said that it was good that God kept the truths of life from the young as they were starting out or else they’d have no heart to start at all.

– Cormac McCarthy (2012). “All the Pretty Horses”, p. 291, Pan Macmillan

Many of us are misguided as youths, believing that life will magically get a whole lot better when we are older. It typically doesn’t. As McCarthy surmises above, if we knew what lay ahead, would any of us bother? Would we ever get out of bed?

Resilience is an important life skill that allows us to cope with the various “slings and arrows of outrageous fortune” that life can throw our way. As we age, life tends to throw  more and more of these challenges at us especially in terms of our health as the irrevocable physical decline inevitably sets in. Such is the fate of humanity.

Coping with HS is a challenge. With HS, it is often a case of one step forward; two steps backward. Just when you think you are doing ok, you wake up some morning with new lesions destroying your peace, setting off the all-too-familiar dreaded repeating cycles of inflammation, pain, and discharge.

 

Resilience and the HS Patient:

Depression is known to be associated with HS, and can place a significant burden on the patients’ quality-of-life. Dr. Joslyn Kirby and colleagues looked at the association of resilience with depression and quality of life in 154 HS patients from the US and Denmark (Kirby et al., 2017).

Adult HS patients were asked to complete a survey comprising four questionnaires looking at, among other things, their demographics, and measures of resilience, depression, and quality of life.

Kirby and colleagues found that within the HS patient population studied, resilience can influence depression. An increase in depressive symptoms had less of an effect on the quality of life of HS patients who had high resilience levels.

 

Developing Resilience:

The good news about resilience and the HS patient is that many of us already have existing inner resolve, as illustrated clearly in these patient testimonials here and here. If you are a HS patient reading this, you have come this far thanks to your resilience. It’s embedded in our DNA. We are, after all, the children of survivors of those who experienced multiple adversity throughout history.

Recent research indicates that resilience can also be taught. Dr. Kirby and colleagues recommend introducing resilience training for those with HS who may be more susceptible to depression.

An increasing number of online resilience training courses are becoming available. A Google search conducted today (18 Apr 2020) reveals multiple free online courses teaching resilience. You have nothing to lose by trying some of these out. Learning or refining resilience will help you in your general life, and may well assist you in dealing with HS.

 

 

References:

Kirby, J.S., Butt, M., Esmann, S. and Jemec, G.B.E (2017) ‘Association of Resilience With Depression and Health-Related Quality of Life for Patients With Hidradenitis Suppurativa’, JAMA Dermatol., 153(12), 1263–1269, OPEN ACCESS, [online], available at: doi: 10.1001/jamadermatol.2017.3596

 

 

 

 

 

 

 

 

 

 

 

 

 

Choosing Undergarments and Fabrics for HS

We in the HS community i.e., patients, physicians, caregivers and others, owe Dr. Tiffany Loh and colleagues a debt of gratitude. For Dr Loh and colleagues, from the Division of Dermatology at the University of Tuscon, Arizona, and at the University of California Los Angeles, have just published important research that is both useful and immediate. Their research is useful to the HS community as their findings can be used by most HS patients in their daily lives; the research is immediate as now it has been published, HS patients can use it straight away.

What about the research?

Dr Loh and colleagues have examined undergarment and fabric selection in HS management, an often overlooked component of living with HS that can make a difference to the levels of discomfort. Until recently, most HS patients discovered what worked/did not for them in terms of clothing through an expensive trial and error process. Now, however, Dr. Loh and colleagues have done the relevant research, and have just published their findings. They have done several things of note:

  • they have conducted the relevant research into the most appropriate undergarments and fabrics for HS patients to wear
  • the researchers have produced an excellent pictorial guide summarising their results, which can be understood universally (see below)
  • Dr. Loh and colleagues have published their research as open access, meaning that anyone with online access can access their research paper freely, today

The main findings of their research can be summarised as follows:

undergarment selection

Image Source

While most of their research applies to female HS patients (who comprise ~ 80% of HS patients), as a male I wish to point out the following: I was fortunate in that my HS journey began in the backside area so I found out quick enough that loose-fitting male boxer shorts were about the only practical type of underwear to use when affected in the backside; from talking to other female patients, I discovered that many females do the exact same i.e., wear loose-fitting male boxer shorts (the picture on the right of Fig. 1 part e above). I would go one step further and recommend that when and where applicable e.g., when in the privacy of one’s home, ditch the underwear entirely and go commando. I find direct exposure to cool air can have a soothing effect on flares.

You can access the full paper here; note, this is a very well-written paper and while some of the paper gets technical, you do not need to have a medical qualification to understand their main findings an recommendations.

 

Reference:

Loh, T.Y., Hendricks, A.J., Hsiao, J.L., and Shi, V.Y. (2019) ‘Undergarment and fabric selection in the management of hidradenitis suppurativa’, Dermatology, [online], available at: doi: 10.1159/000501611, [accessed 08 Sep 2019].

 

 

 

Helping Hands #3 (Tea Tree Oil)

Better keep yourself clean and bright; you are the window through which you must see the world.

George Bernard Shaw

Picture of three bottles of tea tree oil

 

 

Over the years, I have been advised by many healthcare professionals to keep the HS wounds as clean as possible and it is something I take very seriously, as I know many of those with HS also do. I have tried and tested many different supplements in the bath including salts, potassium permanganate, bleach, and Savlon, to name a few, but the one I keep returning to is tea-tree oil.

Tea tree oil is an essential oil (a liquid that forms scented gases) derived from the leaves of the tea-tree, Melaleuca alternifolia, which is native to parts of Australia. It has been used for many years as a traditional medicine to treat various skin conditions. It is reported to have antibacterial and anti-inflammatory properties (see Carson et al. 2006 for a freely available review on these properties).

I have been using tea tree oil in the bath for years and if I am honest, I do not know if it makes the slightest difference to my HS. What I do know is that it does not irritate as many soaps and shower/bath gels do. The main thing in using tea tree oil in baths is that the tea tree oils’  pleasant aroma helps to cover up the foul smell associated with active HS lesions. Like Hibiscrub, it helps me to feel clean temporarily, until the lesions start leaking again. It is important to be able to give yourself a mental boost like this from time to time.

Tea tree oil is widely available for a few euro in most pharmacies in Ireland. A bottle (such as the ones in the picture above) will keep you going for months, even if you are having several baths a week. You only need add a few drops of the oil to your bath water and away you go.

What works for you and does not irritate too much when keeping your wounds and lesions clean? What supplements have you tried when bathing? Have you found anything that helps hide or lessen the terrible smell from some HS lesions?

 

Reference/Further Reading:

Carson, C.F., Hammer, K.A. and Riley T.V. (2016) ‘Melaleuca alternifolia (Tea Tree) Oil: a Review of Antimicrobial and Other Medicinal Properties’ Clinical Microbiology Reviews, 19, 50-62 [online], available at: http://cmr.asm.org/content/19/1/50.long [accessed 25 Mar 2018]

 

 

 

 

 

 

Helping Hands #2 (Keeping a Diary)

One advantage in keeping a diary is that you become aware with reassuring clarity of the changes which you constantly suffer.

― Franz Kafka

 

Picture showing a person writing in a diary

 

One of the best things I ever did for my HS was start a diary. I cannot remember if someone suggested it, or if the idea came by itself, but once I started keeping a log of how my HS was progressing, I was able to identify a couple of triggers which I could control to some degree.

Keeping a diary allowed me to note that my body weight and stress levels influenced how my condition was. With the aid of the diary I observed that once I went above a certain weight, I tended to have HS problems (i.e., more intense and frequent flares). Writing down events also enabled me to identify that when I was stressed about something(s), my body would inevitably react through flares. If there was something on my mind when I went to bed, for example, I would wake up with a new flare and/or an angrier existing one.

Body weight was something I could do something about, so I lost some weight and I continue to work very hard to keep my weight down. I accepted the fact that I cannot live a stress-free life, but I could take steps to reduce stress and avoid things that caused me stress. I also looked at ways to better handle stress.

I know of some people that have identified certain foods, for example, as triggers for their HS. For some women, hormone changes can trigger their HS. Each of us is different and what works for one may not necessarily work for others. Try keeping a diary for a while and see if you can identify what triggers your HS. You may be able to take steps to reduce, avoid, or even eliminate them from your life.

Have you identified any triggers for your HS?

 

 

 

Helping Hands #1 (Hibiscrub)

Picture of a bottle of Hibiscrub

 

My dermatologist recommended this a few years ago and I have become a big fan. It is used by some medical staff in their prep for surgery. It is also used to disinfect a patient’s skin before and after surgery. In some hospital wards it is used as a handwash.

The active ingredient is chlorhexidine gluconate, a strong antimicrobial agent which can kill and/or inhibit many bacteria, viruses, and fungi. I have been advised not to use it too frequently (once or twice per week is enough) as it can kill beneficial and friendly bacteria also.

I use it neat on active flares in the shower/ bath and apply it directly to the affected area  (like you would apply a shower gel or soap). I leave it on for a few minutes before washing it off. I find it helpful in taking the edge off an active flare. Plus, it helps ime feel clean (even if that lasts just a few minutes before the wound starts weeping again).

In Ireland, you can purchase this without a prescription for a few euro in most pharmacies. One bottle can last me weeks/months even when I have active flares.

Have you used Hibiscrub and found it useful? Have you other tips to help deal with flares?