This Is How HS Impacts Mental Health, From Someone Who Has Had It For 17 Years

Hidradenitis Suppurativa (HS) is a chronic inflammatory skin disease that causes painful recurrent abscesses on the skin.

These abscesses often appear in clusters close to each other and sometimes reoccur in the same spot. They scar the skin and sometimes leave sinus tracts under the skin, limiting mobility. They can occur anywhere on the body, but mostly occur in the armpits, breasts, groin, thighs, and abdomen. The abscesses are painful, itchy, and inflammatory. Inflammation can be seen on top of the skin, but HS also increases inflammation internally. This means that HS is systemic. HS also affects quality of life and mental health.

If you have HS and you’ve seen a dermatologist, you have probably taken a DLQI. DLQI stands for Dermatology Life Quality Index. A DLQI is a simple, self-assessment tool evaluating the quality of life for a patient with skin disease. This tool is often used to measure the success of a treatment by monitoring if someone’s quality of life improves. For someone with HS, this is key. HS severely impairs the quality of life.

As a patient, you will be asked questions like:

  • “Over the last week, how embarrassed or self conscious have you been because of your skin?”
  • “Over the last week, how much has your skin influenced the clothes you wear?”
  • “Over the last week, how much has your skin affected any social or leisure activities?”

Then you rank your answers on a scale like this: Very Much, A Lot, A Little, Not at All. As a person with HS, I generally answer ‘very much’ for each of these.

HS is a debilitating disease that causes pain, fatigue, and discomfort. It also affects mental health. Being social is key to mental health. Wearing comfortable clothes that make us feel confident affects our mental health. Feeling comfortable in our bodies and around our peers is paramount to mental health. These questions reflect parts of our life that affect our mental health. When we are unable to feel or do these things, it negatively affects our quality of life.

Hidradentis Suppurativa can cause depression, anxiety, stress, isolation, loneliness, hopelessness, helplessness, anger, grief, frustration, guilt, low self-esteem, and shame. If you have HS and feel any of these things, please know that you are not alone. There are treatment options and coping techniques. There are professionals that specialize in chronic illnesses that can help us process life adjustments and feelings that are a result of HS.

I have answered the DLQI at least 5 times with as many dermatologists. None of them have referred me to a mental health professional, even though my results clearly show an extremely large effect on my life, especially on my mental health. Why? My mental health treatment is just as important as my physical treatment of HS.

I have struggled for nearly 17 years with fear, anger, frustration, and loneliness because of HS. It took me a long time to admit that HS affects my quality of life and learn coping strategies. I still struggle with my mental health. I am just now giving myself permission to recognize and respect my limitations. I started medication to help with my depression after telling my doctor that I feel depressed. I started letting my friends and family see my struggles with HS and they have stepped up. I started an HS Instagram, and am writing this article to feel connected and bring awareness to the HS community.

After having HS for about 15 years, I started discussing and addressing mental health with my doctors. It took me a long time to ask for help. Doing so has empowered me to treat my mental health as an equal partner to my physical health. Reminding myself to be gentle with my mind and my body is key; I am constantly reminding myself that it is okay to not be okay. I do not have anything to prove to other people. I can live at my pace. After taking it upon myself to ask for help from my doctors, I have seen an improvement in my mental health. If you are a patient, ask your doctor for help with your mental health. If you are a doctor, make mental health an integral part of your treatment plan.

Here are some coping techniques for managing your mental health with HS:

    • Write in a journal or diary. It doesn’t matter what you write. Just get the thoughts out.
    • Name your emotions. Naming them will help you address them.
    • Paint or draw or dance or create something. You don’t have to be “good” at it, this is just for you. Share it if you are comfortable.
    • Reach out to your friends and ask if they would feel comfortable listening to you talk for a while.
    • Buy clothes that feel comfortable on your skin and make you feel confident!
    • Do something that relaxes you. This could be: practicing yoga or Pilates, going on a walk, reading a book, taking a nap, lying in the sun (with sunscreen of course), singing, baking, taking a shower, etc.
    • Give yourself permission to have a day without a to-do list or an agenda. Take a day to relax and heal.
    • Have a good cry, it’s okay to cry!
    • Do some research into HS on your own. Knowledge is power! I like these sites for HS info: hopeforhs.org, mayoclinic.org, rarediseases.org, hs-foundation.org, hsfoundation.ca.

Other ways to support your mental health could be sending your family and friends information on HS, because sometimes, people need prompting to educate themselves. This way they can learn about HS and you do not need to do too much teaching.

You can also follow HS support groups. There are several groups on Facebook and Instagram that I find to be validating and supportive. You can generally find them by searching for Hidradentis Suppurativa.

You should also consider telling someone that you are struggling. People often want to help but they don’t know when or how. This allows you to open up a conversation with someone. If they shut you down, then you know they are not a safe person for your feelings. Additionally, ask your doctor for help: Ask them for a reference to a mental health counselor. Ask if it is possible to take antidepressant or anti-anxiety medications. Sometimes doctors need to be reminded that there are other facets of you.

If you are struggling with this, great advice I received was to write down a list of what I want to talk about with the doctor. Then hand this to the nurse when they check you in and ask them to give a copy to the doctor. This ensures that you address each item on that list!

If you feel like you are not being heard by your doctor, dermatologist or otherwise, it is okay to seek out a new doctor. You do not owe your doctor anything, especially if they are not receptive to your mental health concerns.

If you are experiencing a crisis, having feelings of self-harm, or are thinking about hurting others, contact the crisis text line at 741741 or the National Suicide Prevention Lifeline at 1-800-273-8255.

About the author
Kathryn Shusta is a social worker and mental health advocate. She is obsessed with florals, Harry Potter trivia, and fighting injustice. To bring her joy, she likes to take wistful walks through meadows and go on boat rides. Follow Katy on Instagram or read more articles from Katy on Thought Catalog.

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