Looking after yourself emotionally

Hidradenitis suppurativa (HS)

Living with a long-term (chronic) illness can have emotional, as well as physicals, effects. This is common and understandable.

If you experience emotional effects, you are not alone.

Feeling frustrated, anxious or low is not a sign of weakness. Many people feel this way when they live with a condition like hidradenitis suppurativa (HS). 

Understanding your feelings

Try to be aware of your feelings or emotions. Noticing and being able to name them (sad, grumpy, irritable, anxious, overwhelmed, stressed, happy, excited and so on) is a good first step.

There is no need to try to change your mood. Just feel your emotions exactly as they are.

Then, ask yourself what caused the feeling. Was it a thought, a memory or something you saw? Maybe it was something that someone said or did, or a physical sensation.

When you know the triggers, it can be easier to understand and manage your feelings. Write down your emotions exactly how you felt them.

Coping with difficult feelings

Talk to a friend or healthcare professional about how you feel. They might suggest how to cope. There are also support groups for people with HS.

Think about other times when you have managed difficult feelings. What methods of coping did you use? Were they helpful? Could you use them now?

If these emotions make you feel bad, it's understandable to want to get rid of them. Sometimes people use food, drugs or alcohol, or do things such as keeping busy, to handle their feelings. This might help in the short term, but can often be unhelpful in the long term.

Mindfulness

Getting rid of feelings (positive or negative) is difficult. Using your energy in this way might not help you.

Instead, try noticing your feelings without trying to change them. This is part of a practice called mindfulness.

Being mindful of your experiences takes practice. There are many books, free YouTube videos and online audio tracks, CDs and apps about mindfulness. You can explore them to see if mindfulness helps you. 

Coping with unhelpful thoughts

Thoughts come into our mind throughout the day. They can be pleasant, unpleasant or neutral. The mind is a bit like a storyteller or a narrator, commenting on what happens.

Sometimes, the mind comments in helpful ways. It might draw our attention to interesting or pleasant things. We might be reminded of happy memories or things we have planned, such as phoning a friend.

During times of stress, the mind can be less helpful. It might share unpleasant memories or scary predictions about the future. These thoughts are not always facts, even though they might seem convincing.

You can respond to your thoughts with 2 steps.

  1. Notice your thoughts. What is your mind saying?
  2. Challenge the thought or be mindfully aware of it.
  1. Notice the thought that has come into your mind.
  2. Try not to judge the thought as good or bad.
  3. Ask yourself, is this thought a helpful one? If so, perhaps pay attention to it and act on it.
  4. If it is not a helpful thought, just observe the thought instead of reacting or responding immediately.
  5. It might help to imagine the thought being a headline in a newspaper that prints exaggerated and sensationalised stories.
  6. Let the thought pass, like leaves on a stream or cars passing by outside your window.

You can challenge your thoughts by asking yourself the following questions.

  • What makes me think this thought is true?
  • Is there anything to suggest that this thought might not be true?
  • Is there another way of looking at this?
  • Is there another perspective that is more logical or balanced?
  • If a friend had this thought about themselves, what would I say to them?

No one can stop unwanted thoughts, but challenging them can help you to see things from a different perspective. This might help you to cope with your thoughts.

Here's an example of how you can do this.

Jess was invited on a holiday in the sun with close friends and some people she did not know. She had the thought, ‘When they notice my scars and abscesses, they’ll think I’m disgusting . The holiday will be ruined'.

Jess’s close friend, Shabnam, heard that she was thinking about not coming on the holiday because of these worries. Shabnam suggested thought-challenging. Although Jess was unsure, she decided to try this. When she noticed the negative thought, Jess worked through the different steps. She kept a list of them in her wallet.

Jess had two alternative thoughts:

  • a logical thought
  • a compassionate thought

Logical thought

"Even though it is likely that they will notice my scars, it is not necessarily true that they will find them disgusting. I can’t know for sure until I go there and find out. Half of the group are people I do know and like, so the trip won’t be totally ruined, even if it’s not as I had hoped."

Compassionate thought

"It’s understandable that I’m worried about how other people might perceive me because of the experiences I've had in the past. The kindest and best thing I can do for myself is to focus on the people I do like and trust. I can also think about all the good things I can get from this holiday."


Vicious and virtuous cycles

The ways that HS can affect your body, thoughts, feelings and choices are all linked. A change in one area can have a knock-on effect in another area. For example, the way we think about situations affects how we feel physically and emotionally. It also influences what we choose to do.

Some of these thoughts, feelings and choices are helpful (virtuous cycles) and some are unhelpful (vicious cycles).

Amy has been living with HS for 10 years. Early on, some insensitive people at college made rude remarks about a visible scar. They also made fun of her when an abscess leaked through her t-shirt.

Since then Amy has not socialised much, except with people that she knows well. Amy waits until she does not have symptoms before trying new things.

As a result, Amy does not try new things often. She never has the chance to find out if new people she meets are just like her old classmates.

Amy often feels fed up and sometimes low in mood. When she feels low, she often thinks ’I can’t be bothered. What’s the point anyway?’ She then decides to stay at home.

Make a plan

Deciding what to do and planning to lead a fuller and happier life takes work. You need to think about what your goals are and how best to achieve them. 

1. Do what matters

When you're having a hard time physically or emotionally, you may stop doing things that are important to you. Examples are exercising or meeting friends. 

Try to do something most days that matters to you. This could be seeing family, doing your work or enjoying your hobbies.

2. Do things you enjoy

Look out for opportunities for fun, laughter and pleasure. This could mean meeting a friend who makes you laugh, watching a comedy show, watching ootball or soaking in the bath.

Do things that give you a sense of satisfaction when they are complete. Try to notice whether these activities affect how you feel in your mind and body.

3. Set goals

Making changes, such as stopping smoking or trying to lose weight, can be difficult. Many people do not know where to begin. Try to set a specific goal.

Goals are easier to achieve if they are SMART.

  • Specific. What do you plan to work towards? When, where, how and with whom?
  • Measurable. How will you know that you have reached your goal?
  • Achievable. Try not to set goals that are too ambitious and set you up to fail. This is usually unhelpful and disheartening.
  • Relevant. Is this goal meaningful and important to you?
  • ime-limited. When do you want to reach the goal? Is it a short-term, medium-term or long-term goal?

Write your goal down. Share this goal with a friend, family member or healthcare professional. They might have some helpful ideas.

When you reach your goal, give yourself a reward. This should be something that you enjoy, like a cinema trip or your favourite meal.

If you have a setback and do not manage to reach your goal, try not to give yourself a hard time. Think about what got in the way. You are then prepared if you face this difficulty next time.

If you think you set an unrealistic goal (one that was too difficult), try to make it more achievable. Then re-commit to the goal, rather than giving up on it.

If you find that you keep reaching barriers to your goals and struggle to overcome them, it might help to use a problem-solving approach.

4. Problem-solve 

Problem-solving is a step-by-step way of overcoming things that stop you from reaching your goals. It can work in many situations.

Using these steps can help when you feel overwhelmed and do not know where to start. They are particularly useful if you face more than one problem.

  1. Define the problem. What exactly is the challenge? Try to complete this sentence: ‘The problem I face is...’. 
  2. Prioritise. If you have several problems, write a list. Choose 2 or 3 problems and order them from least important to most important. Put a circle around the one you have chosen to work on. 
  3. Ask yourself ‘Is this a problem outside of my control?’ Some problems cannot be solved, despite your best efforts. For example, public transport delays, the weather and other peoples' choices and behaviours are all outside of your control. If you think there is something that you can do about the problem, continue following the steps below. 
  4. Make a list. List as many possible solutions to the problem as you can. Write down everything from the most simple to the most far-fetched and funny. This helps you to think flexibly and consider lots of options. 
  5. Choose a solution. Pause and review the solutions. Which one do you think will help you get closer to solving the problem? Choose something from your list that is manageable and realistic. 
  6. Make a plan. Decide when, where and how you will carry out the solution that you have chosen. Try to be as detailed as possible. Write down your plan and put this somewhere you can see it. 
  7. Do not get distracted. It is common to start with these steps and then get distracted. Put a reminder in your phone or tell a friend what you plan to do. 
  8. Do it. Now it is time to try the solution that you have chosen.
  9. Review if the solution worked. Did the solution go to plan? Did you get closer to solving the problem? If it did not go to plan, break the solution down into smaller, more manageable parts. You can also go back to the list to choose another option.

5. Do not overthink it

Being aware of your body and mind can help you to make good choices. However, being too aware of them can make it hard to enjoy what's happening 'in the moment'.

It can help to put your feet flat on the ground and simply notice how this feels. You can also focus on what you can see and hear in the world around you.

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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