Physical, emotional and social effects of HS

Hidradenitis suppurativa (HS)

Living with a long-term (chronic) skin condition like hidradenitis suppurativa (HS) is not just about managing physical symptoms and flare-ups. It can affect your emotions, social life and the way you see yourself, the world and the future.

Physical effects of HS

HS can cause some uncomfortable and unpleasant symptoms. How often and how badly these happen are different for each person and each flare-up. 

HS symptoms include:

  • visible lumps and abscesses
  • pain and discomfort
  • discharge (pus) from the lumps, sometimes with an unpleasant smell
  • infection (not all abscesses with discharge are infected)
  • visible scarring
  • unwanted side effects of the medicines used to treat HS (for example, weight gain and fluid retention, or antibiotics might cause yeast infections (thrush))
  • acne or unwanted excess hair (hirsutism)
  • pain or discomfort because of treatments such as surgery
  • difficulty sitting or moving about because of painful lumps
  • a high temperature (fever)
  • extreme tiredness (fatigue) and problems sleeping

Read about looking after yourself physically.

Social effects of HS

HS can stop doing the things that you enjoy. You might avoid hobbies or social situations because of your symptoms.

You might refuse an opportunity at work, like giving a talk or managing a project. Maybe you avoid physical closeness with friends and family.

By avoiding things, you do not have to face difficult situations. However, over time, this can lead to isolation. It can make you feel worse physically and emotionally because you do not have opportunities for pleasure, fun, activity and achievement. 

Your HS may also mean that you have to do things you would rather not do. For example, you might:

  • avoid moving about because of painful lumps
  • spend time trying to cover up the abscesses or scars
  • choose your clothes carefully (tight clothes can affect some people's symptoms)
  • be careful about the products and cosmetics you use
  • miss work, school or college because of flare-ups
  • change or postpone activities that you were looking forward to when your symptoms are bad

Having to make these changes can lead to lots of different reactions. For example, you might feel frustrated, overwhelmed or downhearted.

Read about looking after yourself socially.

Emotional effects of HS

The impact of HS on your life can make you feel many different emotions.

Read about looking after yourself emotionally.

Shame and embarrassment

As HS can be a visible illness with sometimes unpleasant symptoms, there might be times when you feel ashamed or embarrassed.

You might have to deal with other people’s misunderstandings about the condition, such as the idea that it is contagious. You might also be worried about what other people think. For example, you might suspect they think the condition is somehow your fault because of your lifestyle or personal hygiene.

These feelings might even have stopped you from telling your doctor about your symptoms. This can mean a delay in getting a diagnosis and treatment.

Anger and irritability

You might feel angry about having this condition, and about the limitations that it puts on your daily life.

You might feel irritated when you get a new lump or when you have to deal with symptoms, such as pain and discharge.

For some people, it can take a long time to be diagnosed. This can also lead to frustration. 

Feeling disappointed or helpless

If you have followed medical advice and had surgery but still get regular symptoms of HS, you might feel disappointed or disheartened. You might start to feel helpless.

Anxiety

You might have different worries that cause anxiety and stress. You might worry about the next abscess or about the condition getting worse over time.

You might worry about how the condition affects your work, family life and close relationships.

You might also feel worried and anxious about what other people think about you.

Depression

Living with a long-term (chronic) health condition can increase your chances of experiencing low mood or depression.

You might avoid hobbies, social outings or intimate relationships because of HS. At times, you might feel bad about yourself and the future. Perhaps others have not always been kind or understanding about your HS. All of this can contribute to low mood and depression.

See a GP or tell a health professional if you feel depressed or have thoughts that your life is not worth living. Go straight to your nearest emergency department (A&E) if you think that you might act on these thoughts.

Negative thoughts and beliefs

People with HS say that they have other upsetting thoughts and beliefs. For example, you might:

  • feel that you are not in control
  • think that you are helpless or that the situation is hopeless
  • think negatively about how you look
  • believe that you cannot cope with the condition
  • assume that you will get negative reactions from others, even before it happens

Positive, 'glass half full' thoughts might help us to deal with difficult times. However, in times of stress, our minds often imagine worst case scenarios and we see things in black and white ways. 

Thinking-style Thoughts 
Thinking the worst 'This flare-up is so bad that I’ll have to take time off. If I take time off, I’ll definitely lose my job.'
Mind reading 'That person thinks I don’t wash properly or that I don’t take care of myself.'
Overgeneralising 'I’ve got a new abscess and I haven't had one in ages. That means I’ll definitely get loads of abscesses this month.'
Jumping to conclusions 'The doctor raised her eyebrows and I think she looked shocked when she examined me. That means I cannot be treated.'
Thinking style Thoughts
Discounting the positive 'My symptoms haven’t been so bad since I stopped smoking, but it’s probably a coincidence and soon they’ll be back.'
Self-criticism 'I can't do anything right.'
Pressurising language (should and must) 'I should be able to cope with this by now. I must get on top of this.'
Black and white thinking 'I can only get on with life when I get rid of this condition completely.'
Wishful thinking 'If only this didn't run in my family.'

Resource number: 3945/VER3
Last reviewed: November 2021
Next review due: November 2024

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If you have any questions or concerns, contact your clinical nurse specialist (CNS). You can find their details at the top of your clinic letter, your CNS contact card or medicines booklet.

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