An Education In Madness – Melissa’s Hidradenitis Suppurativa Patient Story

To be honest, I’ve never had it easy. I went into foster care at 5 years old due to horrific child abuse. I was diagnosed with depression at the age of 6. I spent my life being bullied for having no family, for being a care kid and for being different. At 17 years old, my doctors said that my depression was chronic and I’ve been on medication for it since. I was a magnet for abusive partners because that was all I felt I was worth. At 20 years old, I lost my daughter to adoption due to being in an abusive relationship (despite leaving my ex long before the adoption happened) and because the social services claimed that after being abused as a child, I would subject my daughter to that same treatment.

I know, right? I know what it’s like to be a child abuse victim. I wouldn’t wish that on my worst enemy, let alone my own baby girl.

I spiralled further into depression and thought I would never be able to to smile again but at 23 years old, I found a beacon of light. My boyfriend waltzed into my life and he quickly proved to be unlike any person I’ve ever met. He became my rock, my foundation for happiness and stability. I stopped self harming and started to take better care of myself and he cares for me when I have my bad days. In time, I reached a point in life where I thought nothing could ever go wrong again.

And that’s when I was given a harsh reality check and the world came crashing down around me.

In the winter of 2015, I started getting strange painful lumps in my groin. My partner would squeeze them when they became unbearable and I would bite my lip to hold in the pain. They would pus, they would bleed and they would heal. The smell was unreal but it was nothing compared to the pain they would cause.

I often felt weak powerless. What was wrong with me? What had I done to deserve this?

My boyfriend didn’t seem to mind it. He still told me that I am beautiful but I had never felt less beautiful in my life. I was ashamed, humiliated by my own body and I started to see myself in a completely different light. I felt ugly and dirty, like something a slug would move around to avoid.

Over the next year, it steadily got worse and as my physical symptoms deteriorated, my mental and emotional state did the same. The flare ups were happening one straight after another and they were leaving bigger and angrier holes behind. All I could think was, “God, I’m going to look like the lovechild of Spongebob Squarepants and Swiss cheese if I don’t do something soon”.

So I went to the hospital with a clearly infected hole in my groin. The nurse assessed the wound and put a request for blood tests on the system so my doctor would see it. She gave me a short course of antibiotics and I was sent home.

I finally got my blood tests done but the doctor was only interested in diabetes. When it became clear that I was not diabetic, I was sent home because “nothing else could cause my symptoms”. I was left to suffer alone.

Eventually, I was given a diagnosis: Hidradenitis Suppurativa.

The doctor knew nothing about HS and the small amount of information she gave me was from a sheet of paper that she printed from the internet. By that point, I was reeling. Never ending pain? No cure? What did I do wrong?

Since then, I have had nothing but problems with doctors and their approach to both myself and my health. I have seen pretty much every doctor and nurse at my doctor’s practice and none of them know anything about HS. They didn’t even know it existed. I have had to attempt to educate each one about my condition but they have no interest in learning about a disease that only one patient suffers from. After all, I am only one person. Why should they learn about a disease if they don’t have to deal with it often? I have been treated with disrespect and even repulsion by doctors. I understand that HS is rare and information is limited so I can maybe excuse their ignorance but it does not excuse their attitude towards me.

HS has had a huge effect on my mental health. It has alienated and isolated me from the outside world in a way nothing else ever could. The constant pain, terror and confused guilt are endless and often overwhelming. It’s like I have fell into the darkest abyss I’ve ever known and there’s no way out of it. I have discussed this with doctors many times and they just shrug it off like it’s no big deal and I am left to leave with tears in my eyes each time. The lack of help and compassion from doctors has me going around in circles and it is often difficult to see a light at the end of the tunnel, though I am still fighting and will continue to fight for as long as I can.

I have found friendship, compassion and support in others who also deal with this awful, debilitating affliction. Knowing I am not alone, that there are people who actually really understand, has made it a little easier to deal with at times.

To this day, my only treatment is antibiotics and painkillers that don’t do anything. I self care at home but I wish a set treatment could be created to deal with HS properly. In time, the world will become more aware of Hidradenitis Suppurativa and it’s sufferers. Through awareness, more research can be taken further, people can create more efficient treatments and one day, maybe even a cure. Now, wouldn’t that be nice?

5 Comments
  1. Shavaughn Ulven 11 months ago

    Melissa, wow! Your story is definitely one that leaves a lasting impression. Thank you so much for sharing it with us. You are such a great example of strength, and you were able to word it all so wonderfully, that I was able to feel the emotions you struggled with. I was also in foster care most of my childhood. It wasnt until i was 13 that i was adopted. So i can absolutely relate to that aspect as well. As always, Im always here for you, and I really do appreciate getting to know you throughout this process. Thanks again Melissa!

    • JanetBedore 4 months ago

      Thanks so much for sharing your story…..you have been through more then anybboddy I have know in my lifetime.. Nobody deservesHold your head high. this… we are all here for you…..

  2. Author
    Melissa Blair 11 months ago

    Thank you for your kind words, Shavaughn. I’m sorry to hear that you were also in the foster care system. I was pushed from pillar to post from the age of 5 until I was 9 and a half because I wasn’t what the families wanted. Then I was fostered until I was 16, when I was thrown back into foster care because she had had enough of fostering. I was given some childhood experiences but I didn’t actually have a childhood. It’s not the “care”, it is the “I don’t care” system. Kids are just numbers to the social services.

  3. Michaela 10 months ago

    Thank you for sharing your story Melissa. I am sorry that you have been through so much. I am glad that you keeping fighting on and that you still have your sense of humour. I find a sense of humour helps so much. You are part of our HS family now. Much love 💜

  4. Sandi Wyman 10 months ago

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