Essential Insights: Navigating Daily Life with Hidradenitis Suppurativa

Hidradenitis suppurativa (HS) is a chronic skin condition that can significantly impact an individual’s quality of life. It’s characterized by painful lumps that form under the skin, often in areas where skin rubs together. My personal journey with HS began back in the spring of 2018 with a painful bump in my armpit that led me to the emergency room. This was just the beginning of a long and challenging battle with this condition.

Initially, the emergency room physician drained the abscess without providing an explanation for its cause. I was sent home relieved of the immediate pain, but fear took root regarding the possibility of its return. It wasn’t until almost six months later that I was finally diagnosed with hidradenitis suppurativa. The next five and a half years were filled with treatments, surgeries, and the loss of my job due to the debilitating nature of stage 3 HS. However, throughout this tumultuous journey, I learned valuable lessons that I wish I had known earlier.

What I Wished I Knew About Hidradenitis Suppurativa

Here are six insights that could have made my fight with hidradenitis suppurativa more manageable:

1. I Wish I Knew What HS Was

Understanding hidradenitis suppurativa is crucial. When I was first diagnosed, I had never heard of HS, which made fighting this condition even harder. Awareness about HS is limited, and many healthcare providers have little knowledge about it. This often means individuals suffer in silence, unaware of their condition. Advocacy for awareness is essential to ensure fewer people face this battle alone.

2. I Wish I Knew That Healing Wouldn’t Be Linear

The journey with hidradenitis suppurativa is rarely straightforward. Early on, I found myself taking two steps forward and sliding back four. The unpredictable flares were frustrating, but over time, I learned to expect ups and downs. Understanding that your journey to remission may resemble a rollercoaster with its twists and turns can provide some comfort during tough times.

3. I Wish I Knew That I Had To Be Brave and Vulnerable

Dealing with HS often requires courage. It can be embarrassing to seek treatment for symptoms in sensitive areas. Sharing your condition with loved ones and healthcare providers is an act of bravery that can lead to support and healing. I discovered that opening up about my struggles brought more understanding and encouragement from others.

4. I Wish I Knew I Had To Change My Diet

Dietary changes became a vital part of managing my condition. I had to be mindful of my intake of sugary and fast foods, as they could trigger flare-ups. Cooking at home allowed me to control ingredients and maintain a healthier diet. Keeping a food diary to track which foods affected my HS was beneficial, and patience with myself during this adjustment was key. Remember, small progress is still progress.

5. I Wish I Knew How Key Community Would Be

Having a support system is invaluable when battling hidradenitis suppurativa. My family played a crucial role during my healing, especially when I had to leave my job. Knowledgeable healthcare providers and online communities provided emotional support and shared experiences. Engaging with fellow HS warriors brought a sense of belonging and understanding that I had previously lacked.

6. I Wish I Knew How Much Mental Health Matters

Taking care of my mental health became a priority as I navigated the ups and downs of HS. Initially, I struggled to cope with the changes in my body and life. It wasn’t until I began counseling that I learned to reframe my situation. I realized that HS doesn’t define who I am; it is merely a part of my journey. This change in mindset allowed me to reclaim my life and heal from within.

Despite the challenges, I have come to find joy in life, surrounded by family and loved ones. I wish someone could have shared these insights with me sooner, but now I aim to support others on their journey with hidradenitis suppurativa. Remember, you are not alone in this battle, and there is hope for healing and happiness ahead.