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.