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Living with/Caring for Someone Who Has HS? Be Their Advocate.

Giusi Pintori

Translation by Angela Ruggiero

People with hidradenitis suppurativa (HS) often complain on Facebook support groups of the difficulty of talking to their family members about the disease, but also of being listened to and, above all, of being understood by their loved ones. They also find relationships difficult in general, particularly in relation to the work or school environment. They need compassion but can hardly find as much as they would like.

The silence, the lack of assistance, and the total absence of medical and disability benefits exacerbate the suffering from the disease. They need to convey their feelings of loneliness, to share their profound state of suffering, but this also means inducing a state of disturbance and suffering in their loved ones.

It is important to give the patient’s family the opportunity to express themselves to feel relieved, to express their upset, their pain, or their faults. We need to help them reconnect with the patient and restore the communication (which is) very often interrupted and get out of the darkness. Even if it’s not their disease, they still must live with it.

The patient groups are administered by the patients themselves, but their spouses, boyfriends, partners, parents, or children also take part. The illness of the loved one is at the centre among the participants and they often feel frustrated, and driven into a “world” they do not know. Most of the time, thinking that their loved ones are not getting proper assistance makes them feel guilty.

Within the family, new problems can arise, which may often cause the desire to run away. On the other hand, the disease can bring people closer, but these are very isolated cases. For example, we had cases of women who had been left by their partners, but also women confined to the house to dedicate themselves completely to assisting their sick loved one. Unfortunately, by reacting in this way, you can forget to live your life.

Those who join the group expect to receive warmth and understanding from other members who are living and suffering from a similar situation. They too want to let out their fears and bitterness. They seek advice on how to deal with this situation; how not to feel guilty, how to hide the upset, how to answer difficult questions, and manage the patient’s mood swings. Problems caused by the disease do not concern family members as much as they affect the patient.

In fact, family members do not ask “technical” questions. The most frequent question is where to go, to whom, and how to resolve the problem definitively. Too often doctors give inaccurate and wrong predictions that compromise the dialogue with the family: “WITH THIS THERAPY YOU WILL BE MUCH BETTER”, OR: “THERE IS NO CURE SO GIVE UP” To improve communication, to eliminate feelings of guilt, to help people in a situation they are not prepared to face, offering support to the family is as important as supporting the patient. Let’s help them to protect their future; without the support of their families, HS patients can’t make it.  

I encourage you to do it; not everything depends on us, but we can do a lot. Mothers and fathers, mobilise yourselves, do not remain helpless in the face of all this. Taking care of your children depends a lot on the help they receive at home, but also on strong and constant political activism. Talk to your political representatives, and ask for the possibility of speaking with patient representatives. Be available for this great commitment; the life of your family member depends on this but also yours and that of many other people. It is challenging but it must be done. Thank you.

Giusi Pintori, HS patient representative and project manager of Uniciv.

HS Patients Can Lead the Way with Social Distancing and Self-Isolation

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Time for the HS patient to emerge from the shadows and show some leadership. We can help others right now.

Until a few weeks ago, terms such as “self-isolation” and “social distancing” were unknown to most people, but have now become commonplace around the world. For the typical HS patient, while we may not have heard of such new terms, the concepts and practices of self-isolation and social distancing are all too familiar.

I have been self-isolating and socially distancing for most of my adult life. From my experience of interacting with other HS patients in person and on social media, many report the same. There is a substantial body of evidence research to back up  (Esmann and Jemec, 2010; Kouris et al., 2016; Kirby et al., 2017). Many HS patients isolate and distance themselves from others to avoid the stigmatisation, shame, and embarrassment that come with the foul-smelling discharge and staining of clothing that are part and parcel of this condition.

Many people are struggling to adapt to the new reality imposed through lockdowns. Among these will be your family, friends, loved ones, colleagues, and so on. I urge all HS patients with suitable and relevant experience to reach out and assist those close to you and beyond. Show them how to cope with being alone, what you can do to use this time constructively, and how you have managed to adapt. Some useful tips to refresh your memories and point you in the right direction can be found here, here, and here.

As reported recently on Twitter (Palikh 2020):

This virus has a very big ego; he will not come into your house unless you go out and invite him in.

 

If we do step up and help show the way, we can do our bit to help prevent the horror being witnessed around the globe.

 

Strange days indeed….

 

References:

Esmann, S. and Jemec, G.B. (2010) ‘Psychosocial impact of hidradenitis suppurativa: a qualitative study’, Acta Derm Venereol., 91(3), 328–332; OPEN ACCESS [online], available at doi: 10.2340/00015555-1082 [accessed 31 Mar 2020].

Kirby, J.S., Sisic, M., and Tan,. J (2016) ‘Exploring coping strategies for patients with hidradenitis suppurativa’, JAMA Dermatol., 152(10), 1166–1167; OPEN ACCESS, [online], available at doi: 10.1001/jamadermatol.2016.1942 [accessed 31 Mar 2020].

Kouris, A., Platsidaki, E., Christodoulou, C., Efstathiou, V., Dessinioti, C., Tzanetakou, V., Korkoliakou, P., Zisimou, C., Antoniou, C. and Kontochristopoulus, G. (2016) ‘Quality of life and psychosocial implications in patients with hidradenitis suppurativa’, Dermatol., 232(6), 687691; [online], available at doi: 10.1159/000453355 [accessed 31 Mar 2020].

Palikh, G. (@DoctorPalikh) (2020) ‘Just loved this statement from the AIIMs doctor on NDTV…..”This virus has a very big ego, he will not come into your house unless you go out and invite it in”‘, Mar 22 2020, available: https://twitter.com/search?l=&q=ego%20from%3Adoctorpalikh&src=typd; [accessed 31 Mar 2020].

 

 

 

About

I  have been living with hidradenitis suppurativa (HS) for over 30 years and have experienced many surgeries, medications, treatments, and healthcare professionals in that time. For most of that time, I kept the condition to myself or to a select few that were close to me. I believe it is important to speak out about living with HS. I am writing this let people know what it is like to live with HS.

I am also writing this to let people know that there is a lot of exciting scientific HS research happening at the moment and researchers are making huge strides in understanding the condition. I hope to relate to you some of what researchers are learning, and how we might use this knowledge to improve our lives.

I would like to connect with others who have HS, or suspect that they may have it, or some of you reading this may have someone close to you living with HS. Please feel free to write me a mail, or leave a comment. I would love to hear from you.