Part 3 of the Hidradenitis Suppurativa Awareness Week 2020 Series.
We have come to the end of the series. Although not the end of the awareness week. During this week, there have been little things that have come up that didn’t fit into the blog posts. But maybe helpful. So, over the weekend, I will be posting on social media some info graphics.
One of the most potent tools of awareness is the personal story. I can sit here and write pages of definitions. But that will be of little comfort when you feel hopeless.
People are powered by stories. Today is my story. It won’t be an easy read, I warn you. It wasn’t easy to write, and it has no end just yet. Even so, here it is.
When I was 14, a lot happened all at once. I had been assaulted at school. And as a result, changed schools. So, when I experienced a lot of symptoms all at once, it wasn’t all that surprising. Stress is a powerful thing. I developed a strange allergy to deodorant, which I know now had nothing to do with deodorant. I gained weight, and my periods disappeared for months at a time. Only to come back with so much pain, I couldn’t cope.
The first lesion that I remember having no alternative explanation for was on my thigh. It was sore but not a big deal. When it reoccurred over and over again, I didn’t tell anyone.I was 14 and embarrassed.
I did visit a doctor for my other symptoms but received no help, other than a scalding for my weight gain. It was a year later that my condition became severe.
At 15, I developed an abscess. The pain was agonizing, but I refused to see a doctor. Because I didn’t want to re-experience the shame from the year before. I hoped it would take care of itself. After five days, it was clear it wasn’t going to. So, I told my parents and they made an appointment with the family GP.
According to the NHS, an abscess is treated with a procedure called an Incision & Drainage. More commonly called lancing. A small incision is made in the swelling, and the infection is drained away. The wound is kept open with gauze to make sure the wound is clear and then allowed to heal. According to the HSE,a small abscess can be drained under local anesthetic. And a large one can be done under a general anesthetic. Most often it is done under a local anesthetic.
I don’t remember the procedure. I have little flashes, but the rest is blank. My abscess was “very large” according to my medical records. And it was drained with no anesthetic in a GP’s office. The doctor told me in the follow-up appointment that my weight gain was to blame, and if I lost weight, it would go away. I didn’t see a doctor for my lesions again until I was almost 19.
The procedure was the most pain I have ever experienced. And the follow-up appointment the most humiliating. I did lose weight in the years after. What I didn’t lose is my HS. In the years since I have suffered with a lot of anxiety and low self-esteem around my body. I believe that this experiences was one of the key events in my development of mental ill-health.
You can’t cause HS. It is a disease with genetic and hormonal parts. And there is no cure. Unfortunately, my experience had long-lasting psychological consequences. But, with the help of a therapist, that experience doesn’t have as much of a hold over me anymore. This post is proof of that.
In the years after the abscess, I developed one strange reoccurring lesion on my chest. It looks like a surgery scar, and it still reoccurs. Lesions can look different from one another. So, I never made the connection between this lesion and the abscess. I saw a doctor again, but they hadn’t been able to tell me what it was from the scar. A second doctor a couple of years later diagnosed me with acne.
Acne is a common misdiagnosis. Although another name for HS is Acne Inversa. HS is not acne like you know it. I’m not sure that they are related. I didn’t get face acne often in my teens, only HS.
Last summer I found a lump under my arm. I knew it wasn’t a lesion, it wasn’t inflamed or even sore. I confess, I googled my symptoms and like every set of symptoms one might google, my answer was cancer. An appointment with a new GP determined it was a swollen lymph node from an infected lesion. The doctor prescribed antibiotics and was to come back in two weeks.
.The antibiotics had done their job, and there was nothing to worry about. Moral of the story: don’t google your symptoms.
The follow-up appointment was not with the same doctor. While I was waiting in the waiting room, I saw the Irish Skin Foundation’s leaflet on HS, and I picked it up. I had remembered reading an article about it years before but couldn’t remember the name. It was long and unpronounceable. And anyway, I had been diagnosed with acne. I read the booklet and knew it was describing my condition.
I took the booklet with me to the consultation room and explained my history to the doctor. It was amazing that nobody had ever asked me if I had anything like it before. Individual lesions were examined and treated but never kept track of, except by me. The doctor examined the scars on my underarms, which have now developed sinus tracts. And then confirmed what I now knew.
In the past year, I have taken some steps to manage my condition. I have a wash called Hibiscrub, and I gave up dairy. I plan on adopting a plant-based diet in the future, but I’m taking that one slowly. I also joined a couple of online support groups on Facebook. And I have had some luck reducing my symptoms.
That was until about three weeks ago.
I have just recovered from a massive flare-up of five lesions. I have never experienced so many at one time. And my GP feels it is now time for me to see a specialist.
When I was first diagnosed, I was terrified this disease was going to take over my whole body. But over the past year, I have heard so many personal stories—some of remission and some of the progression. I began writing about HS this year and have learned so much. My doctor understands some about my condition and is taking measures to help me manage it.
I thought I would feel more scared now, but I don’t. I feel like all the education I’ve had in the past year means that I can take a more active role in my HS management.
Lots of people are ashamed of their condition. I was, but I’m not anymore. I didn’t do this, but I have lived through it, and I deal with it. If somebody reads this and has a negative opinion, that doesn’t say anything about me or even HS more generally. It only says something about the person with the view.
The personal story is one of the most potent awareness tools. It is also one of the most cathartic experiences. I have benefited enormously from other stories, and I hope mine does the same for someone else.
People are powered by stories.
As promised here is the list from part one. As well as some I discovered this week during Hidradenitis Suppurativa Awareness Week 2020.
- HidraWear products and blog
- The Irish Skin Foundation’s booklet.
- Facebook support groups
- Hope for HS
This week I discovered the work of Ivanna Epsy. Ivanna created a documentary following two African-American women with HS called My Gold Lining. Ivanna has also been hosting a virtual summit this week. She has just launched a YouTube Channel, and you can subscribe here.
The HS foundation is a resource based in the US that supports patients with HS. Their mission has four components, education, research, advocacy and history. You can check out the site here.
As always if you have any comment or questions, leave them below.