Help For Hidradenitis

Annabelle’s Story: Healing, Hope, and the Power of Taking a Break

Annabelle

Today I want to share the story of Annabelle, a patient I had the honor of working with through the work of my non-profit. Annabelle was diagnosed with HS fifteen years ago. She underwent extensive research and tried every medical treatment available but was ultimately unsuccessful in finding a feasible treatment for her condition. She experienced HS in her groin and abdomen, which caused her to avoid typical everyday activities like walking. When she discovered my fundraiser and the work of my non-profit, she contacted me and was selected to receive a sponsored surgery for free, which would alleviate her HS pain. Annabelle expressed how “this surgery gave me (her) life and freedom to be a person again, and it feels as if I (she) can walk on earth and feel normal.” 

Working with Annabelle and hearing her story makes me think about my experience with the physical and emotional impact of a medical condition. For me, the experience of a soccer injury was not as rare as HS but it did affect my day-to-day life and sense of self and community for a period of time. My injury changed the vision I had for my future as well as my day-to-day life, which pushed me away from my normal routine. My confidence in my skills faded when I was injured, and I feared getting hurt again. This caused me to disconnect from a community I built within my team, and my love for the sport and the connections I built with my new team slowly felt like they began to disappear. But just as Annabelle found a way to cope with HS, I still found a way to be a part of the team even though I couldn’t play anymore. I did this by going to the games and continuing to support the girls who were once my teammates. 

Inspired by Annabelle’s story, I wanted to find a way for those suffering to understand that if they are in pain, they should not be afraid to reach out and ask for help. Annabelle’s HS caused her to stay away from her normal activities, just like I had done with soccer. From my personal experience and from learning about Annabelle’s journey, I realized the importance of not giving up on something you love—there are other people out there who have also taken a break from activity to better their mental health and that is okay. For example, a famous tennis player, Naomi Osaka, took time off from a sport she loved to focus on her mental health. This goes to show how if you’re ever in pain, it’s acceptable and understandable to take a break for as long as needed and then come back to something you love with a new positive mindset. 

  1. Let’s start by having you tell me a little about yourself and how you came to find out about “Help Those with HS”
    Your father has done different surgical procedures on me. I first found him online where I read about other patients’ experience and also watched videos. This  motivated me to reach out to him and in a day or two, I was in the office. I felt so comfortable and felt peace of mind as soon as I met him. 
  2. Tell me a little bit about how living with HS has impacted your day to day life, comfort and mobility?
    HS has been life-changing and unfortunately  doesn’t have a cure. When it flares back up, surgery is the only option; the procedures helped me get my life back, and live a life where I can have a relationship. It’s very painful, I can’t imagine sharing a life with someone while having this disease. I always felt tired, and it is painful in all aspects, not just physically. I looked online for hours researching, and looked for books to find a way to treat this. I even went to a witch doctor to try to find a solution but it never worked without surgery.
    • What kinds of activities or movements tend to worsen your symptoms?
      The HS is predominantly in the creases of my body, in my  groin area, leg and now it’s underneath my belly. Regular clothes such as undergarments bind and rub, irritating the HS and making it  uncomfortable and sometimes bleed. Suppose you go to work; it’s flaring and bleeding and humiliating. It also affects my diet. I can’t have soy sauce, dairy, or sugar otherwise it starts new flares.
    • How does HS affect your daily activities, such as work and exercise?
      It makes you uncomfortable due to the flaring and bleeding. There are body aches, where my whole body hurts. My body is fighting an infection that results from  all the flaring. I had to leave my corporate job because the stress of the disease was causing my flares to worsen. I don’t make as much money as I used to but I didn’t want to continue to be stressed.
  3. How has HS impacted your mental health, such as feelings of depression, anxiety, or even low self-esteem?
    It messes with my mind and makes me feel as if I am dirty. I can shower three or four times a day, but I still feel like I’m not clean. This condition makes me feel alone, and others think I am contiguous. It also makes me feel emotional. The suicide rate is very high, due to people giving up. Stress and hormones cause my flares to start up. Going outside and being in nature did help me manage some of my mental challenges. 
  4. Why did you want to have the two procedures and what did it mean for you to be able to get them done?
    The fact is without these procedures my condition would have only gotten worse and deeper. I would have been in more pain and eventually had constant flare ups. Surgery was my only option and Dr. Tahernia is the only one I have found in years that is able to give me that relief. 
  5. How did your experience with HS impact your view of medical professionals and the healthcare system?
    I believe in the power of my mind, but sometimes you just have to seek a doctor; you can’t do it alone. I was scared of taking all the medications the doctors were prescribing, some of  which compromised my immune system because it was still experimental. Many of the antibiotics made me allergic to certain things, such as alcohol, and I would wake up with HS on my face.
  6. Since having the surgery, have you noticed any improvements in your daily routine, mental health or general quality of life?
    Yes, 100%. When I had new flares, it slows me down and causes me to have to relax on the couch and shower. Going outside has helped me in addition to meditation, prayer, and grounding. Anytime I am stressed, I go to the park, take my dog out, or put my feet barefoot on the grass. It’s life-changing. HS caused me to detach from nature and the planet because before I was always enclosed inside and didn’t want to leave home. My mental health significantly improved when I went outside. I like to take deep breaths into my core, exhale, and repeat it; it helps me not stress as much.
  7. What is one word of advice that you would give to those suffering from HS?
    Love yourself, never lose the compassion to ask for help, and never give up.
  8. What are you looking forward to doing more of now that you have had these surgeries?
    Being more active and feeling normal. I get up, put on my clothes, and leave without worrying about bringing bandages to patch my flare up in case I leak. I do not have to worry ahead of time about what my days will look like.
  9. What do you wish people knew about HS?
    I wish they educated themselves more about this disease, so they don’t believe myths out there. I hope one day people can feel more compassionate and empathetic. HS does not go away on its own, and people’s idea is that it’s a zit or similar to acne. We keep it to ourselves, and people do not know how painful it is. I wish people knew that HS causes the physical body to hurt and ache.