How Does HS Impact Mental Health?

Walking by a mirror and seeing the visible wounds of hidradenitis suppurativa (HS) can make for a difficult day. Although HS has unique signs and symptoms, the fact that the wounds are visible makes it similar to other visible skin disorders.

You may feel nervous, ashamed, or blame yourself for the condition of your skin. These negative thoughts and feelings make a big impact on your daily life. Not only do these thoughts and feelings decrease your self-esteem, your social interactions and relationships may also be impacted. In fact, your physical symptoms may worsen as a result of your feelings and emotions.

These feelings and thoughts are real, and you are not alone. It is important to shed light on this topic to decrease the stigma of mental health on HS, and to understand that there are tips and resources for support.1

Intense emotions and inflammation: a difficult cycle to break

Studies have shown that intense emotions and stress can increase inflammation or irritation within the body. Because HS is caused by inflammation inside the body, these emotions and stress can make your HS symptoms worse. This cycle of stress, inflammation, and symptoms is difficult to break. The more symptoms you have, the worse your stress – and the cycle continues.2

HS and the impact on self-esteem

You may have spent a lot of time adapting and making changes in your daily life because of HS. You might have had to change how you dress, your hygiene routine, and your activity level. These changes can impact your self-esteem and how you look at yourself.

Feeling that others around you do not understand HS or judge you by your appearance further decreases your self-esteem. It does not matter whether these perceptions are true – to you, they are very real.

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The time spent adapting to HS can trigger embarrassment, isolation, and self-consciousness. All these factors may contribute to lowering your self-esteem.3

Overcoming self-blame

HS is not caused by poor hygiene, infection, or anything you did. Self-blame is common in HS and can be destructive. Blaming yourself for a condition that has no cure and no well-known cause can leave deep emotional scars.

Overcoming self-blame is not easy. Maybe you have been blaming yourself your entire life and this has even impacted the relationships you choose. Here are a few things to keep in mind when trying to overcome self-blame:4

  • Recognize the difference between taking responsibility and blaming yourself. Instead of blaming yourself, try to focus on all the factors of an outcome. No one is perfect, and you can start to look at ways you are not to blame.
  • Make a list of all the things you like about yourself. While this may seem hard or something you do not want to do at first, this can be valuable to reflect on when you start blaming yourself. If you do this enough, you will no longer need this list because you may be able to automatically stop the negative self-blame.
  • Learn to look at yourself in a non-judgmental way. This takes time and effort on your part. Try to recognize when you are blaming yourself for things out of your control. Instead of blaming yourself, think back on that list of what you like about yourself.

Finding the support you need

Finding support for your mental health is a priority. Talk to your doctor about your feelings and emotions, since these are just as important as your physical health.

Advocacy organizations are great resources for the support you need at this time. You may find that becoming an advocate for others with HS helps you to avoid the negative self-image that can occur with the disease. Studies have shown that involvement in advocacy can decrease the burden of disease and improve your quality of life.5,6

Online support forums for HS can be a great place to find the support you need. People with shared experiences can post and support one another online, giving you a sense of community.

You are not alone. HS can be painful, exhausting, and stressful at times. Remember to talk to your doctor, learn to love yourself, and find the community you need at this time.

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Written by: Katie Murphy | Last reviewed: December 2020