Gaslighting Before My Hidradenitis Suppurativa Diagnosis
Last updated: March 2023
Medical gaslighting is a hot topic now, as we become aware of how we are “handled” historically and currently as hidradenitis suppurativa patients. In the past – and that includes as recently as up to about 15 years ago – doctors simply prescribed a lot of bathing and showering, weight loss, and shame. Shame on us for “doing” this to our bodies, shame on us for letting ourselves go, shame on us for odor and infection, shame on us for even passing this disease down to our children as if we are also teaching them poor hygiene. In fact, a lot of that misinformation still lingers.
Have you been gaslit as a hidradenitis suppurativa patient? I have.
First noticing bumps
It took me about 9 years to get a proper diagnosis. Part of the issue for me is that my HS did not appear on my outer skin that could be easily examined; it did not pop up on my underarms, or my chest or breast area, or even in my groin or buttock area, the common places where it first appears for women. Instead, mine appeared in my inner labia, where I don’t have any hair growing. And I’m going to tell you now, because I have alopecia universalis, I don’t have any hair anyway. Mine fell out in 2002 and it’s never growing back, and there’s nothing I can do about it. But because of that, I don't deal with hair removal in any area on my body.
At first when the bumps appeared, I would get an intense itching sensation for a few days, and then a cluster of a few very hard bumps that were incredibly painful. They would inevitably show up on the right side. After some time, they would finally burst and awful, smelly fluid would come out. This happened about four times, and I finally thought to myself, “Okay, you need to get in to the doctor. This is ridiculous. Stop being scared and just go.” You see, I was a single lady, and, well... I did what single ladies did. I had sex. I used protection, but I had sex. I didn’t believe in shame, but I was going to be awfully, awfully mad if I caught something. I hadn’t up to that point.
I had confidence I would be treated compassionately, but that didn't happen
I got an appointment with the nurse practitioner who was in the same office as my beloved OB/GYN. It was our first meeting, but since I loved my OB/GYN (and THAT doctor had done my hysterectomy a year before after some gnarly complications), I had confidence that I would be treated compassionately.
The nurse practitioner saw the bumps. She poked and prodded and squeezed a bit (nothing came out). And then she said to me, “The only reason the skin around the bumps is dark purple is because you keep traumatizing it. It’s like self-harm. You are self-harming. You have to leave it alone and it will go away. I don’t know why you keep getting it, but I’m sure it’s because you keep messing with it.” I told her that I was worried that I had an STI, but the appearance and pain was strictly whatever it was doing THAT. The nurse practitioner told me that it didn’t look anything like any STI she knew about, but this was obviously a case of me being a worry-wart, and I should just leave it alone and it would get better.
"I just sort of gave up"
I reluctantly slid off the paper and table and got dressed. No antibiotics or anything? “No,” she said. “Just keep washing your hands and wash yourself really well, but stop messing with it. You’re bruised around there because you’re hurting yourself.” I just sort of gave up. Plus I was dealing with a lot of other health issues, so I had to keep putting that one on the back burner. I got more lesions, and they did spread to the outside of my skin, they didn’t stay put inside.
And for nine years, I dealt with the pain and odor on my own. Then the lesions started appearing under my breasts, and under my arms. For the love of...[I thought to myself] - is it still self-harm if it’s spreading to these other areas? By the time I made it a priority and also moved to another state, I could get checked by a totally different doctor and maybe get better results. However, it still took 4 different doctor visits and a lot of pleading, and I finally got a correct diagnosis from another OB/GYN - this time from an actual doctor.
Hearing the words 'hidradenitis suppurativa' for the first time
This part is a little difficult if you don’t have a strong stomach. When I went to this new doctor, I explained my symptoms, and I told her I had activity on my labia, and it was somewhat pronounced, so she should be able to observe it. The doctor told me that she thought it might be HS (my first time hearing about it), but she wanted to do a fluid sample and culture. I happen to not get numb from Lidocaine. It’s not because of the color of my hair (redheads are notorious for this), but because of have mast cell activation disease, and something interferes with the metabolism of certain pain medications. (I also wake up incredibly fast from anesthesia.)
So, without any kind of numbing, she opened up one lesion on my labia by slicing it – and then said, “Oh. There’s one behind it. I’m going to have to go deeper and open that too.” So she cut me up with no numbing or pain medication. I can say that it took a lot of trust between us that day. She trusted me not to jump or kick, and I didn’t. I trusted her to keep everything good, and all I can say is, it hurt as much as I expected.
We need to keep educating the medical community
Ultimately, I did receive the correct diagnosis of hidradenitis suppurativa, and was referred to a dermatologist of my choice. I could have started my treatment nine years earlier if the original nurse practitioner would have taken me seriously and not accused me of self-harm.
I was completely petrified that I had somehow contracted an STI, and she had only partially eased my mind while at the same time leaving me with loads of doubt and self-loathing. What WAS I doing wrong?? That’s a message I hear often as a female patient. I firmly believe we need to keep educating the medical community and patients alike so more is fundamentally understood about hidradenitis suppurativa, and gaslighting is not the accepted practice.
When you need to vent about HS, who do you turn to first?