Communication and relationships

Living with hidradenitis suppurativa (HS) can be difficult to explain to others. This could cause difficulties with work colleagues, with friends or in intimate relationships. However, if you avoid talking about HS, this can cause more stress for you and confusion for others.

Although your mind might try to convince you that people would be unkind or reject you if they knew about your condition, this may not be true.

Communicating with people around you

Think about ways to explain your condition to people that you feel comfortable with. Practise saying the sentences with a friend, family member, healthcare professional or someone else who has HS.

Keep your explanation short and to the point. This helps to dispel any myths about your condition, such as ideas that it might be contagious or due to poor personal hygiene. A short explanation also helps people who are not so close, such as work colleagues, to understand your condition.

Example of explaining a symptom

Andrew is a 32-year old man who has been living with HS for about 15 years. He has difficulty managing the smell (odour) caused by HS. Despite his best efforts, there are times when others notice this odour. For many years, Andrew was so embarrassed by this that he would try to get out of the situation as quickly as he could.

However, after many missed opportunities, Andrew thought of another way that he could manage. When other people noticed the odour, he would say with a grin, ‘Before you give me a bar of soap, I know I don’t smell of roses. I have a medical condition’.

He found that people mostly reacted with a nod and a smile. But there were sometimes a few people who did not know how to react, or were rude and unfriendly. 

Communicating with your partner

People with long-term (chronic) skin conditions can, and do, form and maintain close, intimate relationships. At first, they might not have believed that this was possible.

Even though it might seem difficult at first, try to be open about your condition and how it affects you physically and emotionally.

If you are worried that your partner may find that you have a flare-up and be shocked or put off, try to tell them about your condition. This may reduce some of the pressure.

Being upfront in this way also allows you and your partner to adjust your physical relationship for your comfort and wellbeing. This might include changing the position in which you have sex or postponing sex until after your flare-up.

Try to think broadly and flexibly about what intimacy means for you and your partner. If you have pain or inflammation, activities like cooking a special meal together or watching a favourite film on the sofa can create intimacy and closeness.

Try not to guess what your partner might be thinking or feeling. If you are not sure, ask them.

Communicating with healthcare professionals

For some people, seeing their GP, nurse, or consultant can make them feel anxious or embarrassed.

Other people feel bad about taking up too much of the doctor’s time. They may not mention problems, or say that everything is fine when it may not be. If this applies to you, it can mean that you do not get what you need from the meeting. It also stops your healthcare professional from understanding your needs fully.

Try to prepare for your consultations in advance.

• Write down the things that you would like to talk about.
• Remember that you can talk about how the problem affects your life. You do not only have to talk about medical issues.
• When you arrive at your consultation, look at the list with your doctor or nurse. You can then decide how best to use the time.
• The doctor or nurse might ask you to come for a second consultation if they cannot cover all of the topics in one appointment.