Hidradenitis suppurativa (HS) is so much more than a skin disease. It can cause pain, scars and drainage. It can cause difficulty moving and damage our self-esteem. It can be devastating to our mental health. As with any long-term health condition, HS is a disease that can be managed, but not cured. This can be very hard to accept and can result in many changes to our lives. These changes can be physical, but they can also be social, and emotional. People with HS have a higher risk of developing mental health problems.
It is not surprising, as HS can have such a big impact on all areas of a person’s life. It can affect body image, self-esteem, personal relationships, the ability to work and enjoy activities, and physical health.
When you live with a life-long illness like Hidradenitis Suppurativa, its normal to feel helpless. But you are not helpless. There are lots of ways to empower yourself and to learn to self-manage your disease.
Self-management may include recognising and dealing with symptoms, making some changes to your lifestyle, and learning to cope with the emotional challenges you might encounter because of HS.
Self-Management and being proactive in the management of HS may help you feel better, stay active and live your life to the full, not only by improving your physical health, but your mental health too.
Here are some tips to get you started:
Knowledge is power
Learn as much as you can about hidradenitis suppurativa from reliable sources and learn about how it may impact your life. Identify the areas in your life that are impacted by HS and find ways to overcome them. Understanding HS enables you to prepare for a flare up, or to learn what might trigger a flare up for you. Fear of the unknown can cause anxiety and unnecessary worry – so learn all you can.
Move your body
This can be challenging, especially when your HS is flaring. You might not be able to move in a certain way, or you might be experiencing pain. But it is important to find something you can comfortably do.
Exercise causes the body to produce happy chemicals that improve your mood. You might need to make some changes to your favourite exercises or try something new altogether. For example, if you love yoga, but find some of the stretches too painful, do a modified version, or skip parts of the routine. Or if you usually love to run, but your flare up is too painful, try a short walk, and pace yourself. Or perhaps do an upper body workout. It doesn’t matter what type of exercise it is, as long as you are comfortable, it is safe, and you are moving your body. There is always an option, and always something you can do.
Set yourself goals, and plan your days
Setting achievable goals is important. Your goal might be to exercise more, or to spend more time with your loved ones. Whatever it is, make sure it is realistic – something you can achieve, and commit to it. Write it down and work towards reaching your goal. If you face a challenge, or are going to behave in a destructive way, ask yourself, does this help me to meet my goal. If the answer is no, then it might be the right time to change that behaviour. Also, try to have a daily routine – or plan your day. This can make the days feel more structured and meaningful.
Know where to find support
For physical symptoms of HS, we have our doctors or healthcare providers. But emotional support is just as important when living with a chronic illness. You might be comfortable talking to friends and family, and that is great – you are not a burden, everyone needs support from family and friends sometimes.
If you are not quite there yet, there are hundreds of different HS support groups online, and some charity organisations also, who provide support and advice. Being part of a patient support group can be very beneficial, because you are talking to people who can relate to your experience. You might seek support, but often you might find that you are offering it too, to other people in the group. Being helped and helping people is a great feeling. Don’t be shy.
If you are finding your struggles with HS and your mental health a bit overwhelming, this is completely normal. However, if you feel like this for a long time, or feel like losing hope, it is time to talk to a professional mental health service provider. This might be a counsellor, a phycologist, or a psychiatrist, depending on your needs.
Remember, HS can be a very difficult disease to live with. You are not alone. It is normal to feel uncertain, or down about having HS. But there are ways to help you cope and manage these feelings and things can get better. There is no shame in seeking help for your mental health. You do not need to hide.
Take time to relax
Stress is known to be a trigger for HS flare ups. Stress causes the body to go into overdrive, releasing different hormones that cause inflammation. And we all know that HS is an inflammatory disease – so we must keep inflammation in the body as low as we can. Knowing how to switch off your stress response is important.
Everyone has different ways of relaxing so you might have to try a few techniques before you find the right fit for you. It might be a meditation app or listening to relaxing music. Maybe doing yoga, or just something as simple as reading a book. Finding ways to switch off and relax in the moment will be a big benefit to your mental health.
The emotional effects of living with hidradenitis suppurativa can be very challenging. Caring for both your physical health, like taking your medication, exercise and eating well are important, but so too is caring for your mental health. Remember, if your feelings interfere with your ability to enjoy life, you can take action and reach out to your support network and address those feelings. You can overcome challenges as they arise and live a full and happy life despite HS.
Elena Deeley did her degree in psychology at the University of Edinburgh. She has an ongoing interest in mental health and well-being.
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