We continue our week long series with two more stories that were sent to us in exchange for a free copy of The Hidden Plague. Do these stories sound like yours? There are many things that HS sufferers share – including wanting to hide, and isolate themselves.
Part of what Tara has enjoyed the most about the release of her book and her interaction with the HS community is being able to show people that they’re not alone! If you have HS, we know there was a time when you thought you were the only one with it. You’re not. Tara meets more and more people in her everyday life that are suffering from HS. Today we hear from two more of you. You are not alone!
I remember asking my mother about the knots I felt under my arm pit. She said, “Don’t mess with them,” they are probably caused by the deodorant I use. Of course I was hard headed and irritated the knots under my armpit. That was the beginning of my journey with hidradenitis. Besides from the knots I had under my arms I had boils in my groin. I couldn’t understand what was going on with my body. I was too young to understand what was happening to me. I couldn’t tell my parents because I was embarrassed. The boils in my groin began to progress and the knots in my armpits begin to be open slow healing wounds. I walked funny and was in constant pain. I would shower several times a day but, would never felt clean enough. I carried a body odor because of the constant draining of the wounds. I wanted to isolate myself from my parents because I didn’t feel clean enough to sit in their presence. I ended up seeing a few doctors who just put me on antibiotics and sent me on my way. They couldn’t tell me what was going on with me. One lady even told me I thought I had some kind of STD. I was still a virgin so that was not even possible.
Finally I ended up at the hospital where a doctor told me I had hidradenitis. That was the best day of my life because I finally had a name to it. Well the next day was the worst day of my life because I found out there was no cure. I spent hours, days, months, and years looking for a cure on the internet. I was saddened by all the stories on the internet from people who had it for years. I thought to myself that I cannot deal with hidradenitis for another 20 years. I also thought what man is going to love me with this disease. I thought I would be alone for many years to come. Hidradenitis was destroying my body, but even more it was destroying me emotionally.
Life goes on. I don’t know how I ended up in the army considering I had this disease. I’m guessing at this time it wasn’t bad enough for them to reject me. My older sister inspired me to join. I saw her life and I wanted. She didn’t have any kids and money in her pocket. That’s exactly what I wanted. So I joined the US Army. We’ll all hell broke loose when I joined. This disease progressed so quickly after I joined. People didn’t understand what I was going through. I was in pain and would isolate myself in my room a lot of the times. I just wanted to rest and I didn’t care about eating. You can’t be broken body in the army. Although I meet a lot of good people I meet a lot of nasty people. They didn’t understand my struggle nor did they ask any questions. I had to always remember that I had to take care of me and not worry about what other had to say.
On August 13, 2007 I had surgery and gained my life back. I felt like a brand new person after my surgery. I can say that surgery worked for me and I’m 98% better. I know that surgery doesn’t work for everyone so I’m so thankful. It’s been six years and I’m still so grateful to the doctors who helped me with my recovery. As a brand new person I wanted to explore all the things I missed out on and I did just that.
At first I didn’t want this book because it would remind me of my past. Although I feel free from this disease emotionally I still struggle. I would simply like to have this book because hidradenitis is a part of me and made me the person I have become.
-Chantell, 28, Columbia SC
I got my first boil the summer I turned 11. My siblings and I were out of state, staying with family. I vividly remember as I sat in my grandmother’s bathroom and cried, wishing I had a bandage for this blood and nastiness oozing mess on my inner thigh. It was horrible. I’m 28 now, and if I could go back to those simple little boils, I gladly would. I was properly diagnosed about 4 years ago, by my ob/gyn, not the countless dermatologists, pcp’s and multiple surgeons I had seen over the years. I was so excited when I had a name for what had been plaguing me for years! However I quickly became discouraged after searching the internet for information and finding that there are few treatments available. I have tried all sorts of remedies, turmeric powder taken orally and applied topically, zinc supplements, copaiba oil orally and topically, Accutane ( from a misdiagnosis of chronic folliculitis), Asea (which helped, but is way too expensive), antibiotics, I have even had 5 different boils and surrounding skin surgically removed. My surgeries were not the hugely invasive surgeries that most HS sufferers deal with, just minor outpatient procedures. My inner thighs are pretty scarred, and I have recently formed my first sinus tract right on my groin/ panty line L I have to bandage that one up 24/7, except for when I have tape burn too painful and have to go commando. I have 3 on butt that I believe are trying to form a sinus tract, so I am very nervous about that area now. My ass crack is lined with inflamed boils, and so movement, in any capacity, is very painful right now.
As much pain as I am in, and as crappy as things get for me, my biggest motivation for finding a truly helpful remedy/ treatment for HS is the fact that I have 3 beautiful daughters. My mother has HS, though not as advanced as mine. Her father before her had it as well. Even with as little research as “they” have done into HS, at least they acknowledge that there is likely a genetic link. I don’t need anyone to tell me it is genetic for some people, because I know it is for many of us. I would take on the most painful form of this horror if it would keep my darling girls from developing it. My oldest is starting to show signs of puberty, and got a boil on her leg a few weeks ago!!!! Her doctor, who is surprisingly familiar with HS, saw her and said he thought it was a wound that got staph. I hope he is right, but I’m not so sure. My poor, frightened baby, who is only 7, asked me “Is it a boo boo like you get?”. I know I can’t stop it, but if I can help keep her from a life involved with this pain and accompanying complications, please help me do that!
I would absolutely love to have your book! I just found your website today, and then saw your book, looked it up on Amazon. My heart kind of sank when I saw the price, not that it is very expensive. But I’m a SAHM, and my husband is in school full time, working a very low pay job. We struggle every month to make ends meet, and lately we haven’t even been able to do that. We are very fortunate that our church helps us when things don’t stretch enough. We have 3 small children, and we have to make a Christmas for them, and I figured I would get the book later, as a late Christmas present for myself. If I could get a free copy then my Christmas would be complete!!!! I so want to be rid of this constant pain! If I don’t win one of the free copies, I will buy your book anyway, when I am able to, but I really would like to have it sooner, so I can change my life sooner. Thank you for your website, for your encouragement (I see where you respond to so many of your comments), for caring and for trying to help those of us who may be struggling and need a little help!
-Chelsea, 28, Cookeville, TN
***If you already have a copy of The Hidden Plague, it would mean the world to us if you could review it here, on Amazon. Just because your story isn’t on PrimalGirl doesn’t mean that it shouldn’t be seen. Share how reading The Hidden Plague has changed your life!