It all started back in the spring of 2018 with a painful bump in my armpit. Confused, scared, and in pain, I went to the emergency room.
After they took my vitals, the emergency room physician said the best course of action was to drain the painful abscess (a pus-filled lump) in my armpit. The doctor didn’t tell me what caused the abscess. They only said if the lump comes back, I should schedule a visit with my primary doctor or dermatologist (a doctor specialized in skin, hair, and nail conditions).
When they sent me home, I felt a sense of relief because the pain was no longer there. However, fear started to set in due to the unknown of what was causing the abscess to form and the possibility it could return.
Little did I know that this was the start of a very long, uncomfortable, and, at times, difficult battle with hidradenitis suppurativa (HS).
I didn’t get my diagnosis of HS for almost half a year. Once I finally got the diagnosis, it took five and a half years for my HS to get under control. During that time, I worked in pain. I had multiple surgeries. I lost my job because of the debilitating nature of my stage 3 HS. However, I overcame the challenges, and now I am living a wonderful life.
Throughout the ups and downs, I wish I had a guide that informed me how to walk through my fight with HS. If I had the answers to some questions, some guidance, some awareness about my diagnosis, I truly believe it could have made a world of difference.
I don’t want HS warriors to struggle alone in silence like I did. Here is what I wish I had known six years ago—before the first symptom of hidradenitis suppurativa appeared under my armpit.
Let’s start there. I wish I knew that hidradenitis suppurativa existed. When the dermatologist told me I had HS, I had never in my life heard of the disease. That’s a problem. How can you fight against something you don’t know exists? Lack of knowledge and access to information about the disease is a common theme in the stories of people with HS.
Before my diagnosis, HS wasn’t even on my radar. TV commercials about other skin conditions like eczema, acne, and psoriasis were prevalent—I don’t remember seeing anything about HS. There weren’t many healthcare providers spreading the word about HS either. Without any resources, people can go years without finding a treatment plan that works for them.
There were even instances where healthcare providers only had a vague awareness of the disease or flat out didn’t know anything about HS. That did not make me feel confident about getting the help I needed for a disease that can be difficult to treat.
My hope is that people with HS and healthcare providers continue to spread awareness through every medium possible. Getting the word out about HS will make it so that fewer people suffer in silence.
I wish I knew that my journey battling hidradenitis suppurativa was not going to be a linear process. I would take two steps forward only to slide back four.
When I was first diagnosed with HS, I remember thinking, “This disease has a mind of its own.” I would be starting my treatment plan, and things would be going well. Then, a couple of weeks later, I would be flaring.
I found the unpredictable nature of HS to be very frustrating.
It does get better. It could take time to get diagnosed, and it may take time to find the treatment plan that works for you. You will have seasons where your body is feeling great. Other times, it will be a struggle to work through your healing.
Consider the journey to remission (a period of little to no symptoms) a rollercoaster. There will be ups, downs, twists, and turns.
If you want to get the help you need with hidradenitis suppurativa, you will have to be brave. What do I mean by being brave? I mean you will have to disregard any stigmas, embarrassment, or fears to get the help you need.
Due to how and where HS can show up, it can be embarrassing to walk into a healthcare provider’s office and have them inspect the affected area and its symptoms. It takes bravery to make and go to the appointment. It takes bravery to get an abscess drained. It takes bravery to undergo surgery or to start a new HS medication.
I also found it takes bravery to reveal you have HS to a partner, family member, or friend. During my HS journey, I experienced so much support the more I shared about my condition with my care team and family.
I also wish I knew that diet changes were needed after my diagnosis. I could not eat the amount of sweets I once did. I have to watch the amount of fast food and dairy I consume.
I learned that certain foods have a real effect on my condition and my body. Admittedly, I have a sweet tooth and like to indulge in comfort foods like chips. I have learned over the years that those types of foods cause my condition to flare.
When I eat a more healthful diet consistently, I find my HS to be more in check. To avoid bad flare-ups and setbacks on my journey, I try to eat at home, where I can add healthful ingredients and stay away from ingredients that don’t mix well with my HS.
Like breaking any habits, you will have to have patience with yourself. Some people find that keeping a food journal and documenting which foods caused them to flare is helpful.
If you’re going through the process of changing or eliminating food from your diet, remember this phrase: Small progress is still progress. I continue to repeat that to myself along the road to changing my diet to help my HS management.
Although I didn’t start my disease journey with a community, I believe it makes a world of difference when you’re navigating your fight with hidradenitis suppurativa.
My family was everything when I had to leave my professional job and move back home to heal from my HS surgeries. My wife’s help makes the difference when I may be experiencing a flare. Community like that will be your shoulder to lean on, help you change a bandage, and help you mentally work through your battle.
Community doesn’t stop with the support of a partner or family. In addition, you need a community of healthcare providers. I wish I knew how important an empathic, patient, and knowledgeable team of providers would be along my journey.
Community even extends to social media. I can remember when I found an online community of fellow HS warriors. I felt so seen in that moment, and it made me no longer feel alone. Prior to meeting other people with HS online, I thought I was one of very few people who were struggling with HS. Meeting them, I was then able to interact, learn, and gain much-needed support from people in similar situations.
Early on in my fight with HS, I wish I knew how critical it is to take care of my mental health. Before seeing a counselor, I had trouble framing in my mind how much my body and life changed due to my HS diagnosis. I found myself angry, sad, even depressed. My outlook began to change when my mindset changed.
I learned that HS doesn’t define me, and it’s not a life sentence. I discovered that I have hidradenitis suppurativa, but that doesn’t mean I have to live a life with limitations. Taking care of your mental health will help give you the confidence to fight back against HS.
Although I haven’t yet found total remission, I have found a new inner strength, inner confidence, and a greater fight against adversity in life. This battle has made me a stronger and better person. Despite living with HS, I am living my best life—happily married with children. That is something I never thought was possible. I made it through, and so will you. I wish a fellow HS warrior would have told me that, so I am telling you!
