John Herbert and 50 years of living with Hidradenitis suppurativa

John Herbert. shadow people 34x24 oil

We are your neighbors, your class mates, your coworkers, your family or even your best friend. We are everywhere.

Even one of your family could be one of us. Unless you were told you would never know that the person whom you have worked with, played with, have spent your whole life with is fighting every day to trying to have a life like yours. We are that good at hiding. Even you might be one of us and not know it.

We are HS sufferers. The reason HS seems so transparent is the most of the people that live with it are ashamed and or ignorant of the fact that they have a disease called Hidradenitis Suppurativa. We have been told by parents, teachers, friends and even doctors that our symptoms are self-inflicted, that if we took better “care of ourselves” we wouldn’t have our “little problems”.

Ignorance has driven HS victims so far into hiding that some of us will live a life of pain, depression and what I think to be worst is to be totally alone. To have something that is literally consuming you and being too ashamed to share it with your most loved ones is a hell on earth. Humans are social beings take that away and you feel less than human. This has to stop!

Hidradenitis suppurativa hidradenitis sup·pu·ra·ti·va (sŭp’yə-rə-tī’və)

That is one hell of a word. The medical community knew about this in the early 1800’s they have known for a long time what HS can do to a person the problem is they don’t know the cause or the cure. It took decades to decide what to call it, as for treatments they vary as much as the people that have HS. Biological, hormonal, chemical, diet I have heard all these terms and more. Some say the cause is obesity others hygiene and still others say it’s diet all the processed food we eat is killing everyone the latter might be true for a lot of us but I don’t believe any of it is the cause of HS. It is my opinion obesity and possibly hygiene problems could be some of the symptoms of HS.

Let’s talk about the symptoms of HS. Boils, lesions, cysts that form usually in the creased areas of the body such as the arm pits, under the breast, the thighs and buttocks, and in my case also my face, neck, belly button just about any inconvenient place on my body. The out breaks can range from a minor pea sized irritation to a golf ball sized lump that is so painful that it is debilitating and this can all happen within hours any relief at all comes with a messy smelly release of puss. The open wounds are just as painful though and now you have an awful smell to deal with. And to top this off the infections can travel through sinus tracts and spread out to become many. I have been told that if I lost weight, ate healthier and had better hygiene I would not have this problem. I would like to address that now.

My first of what I considered a debilitating outbreak was in my arm pit. I was 17 at I was in my peak condition I had just completed my basic training for the Army. I saw an army surgeon and he cut the lesion put a wick in it put a bandage on it and told me to get back to duty and to shower more often. Beside my usual morning and evening showers I added one at lunch. After about a week the wick came out the wound healed and all was well until the next outbreak. Then it returned in both my pits and on the back of my neck so I increased cleansing with antibacterial soaps to no avail. I was in my best physical condition, I was eating well enough according to the U.S. Army and I was scrubbing myself raw so much for obesity, diet or hygiene having anything to do with HS in my case at that time.

Over the next twenty or so years I saw several doctors when my outbreaks got bad enough to make me go to urgent care. And got the same old lance, pack and antibiotics and never a mention of HS. I got to the point that I purchased a scalpel and did it myself. Except for the visits to a doctor to lance what I could not reach I kept my condition from every one. I learned to hide the pain, became adept with treating and dressing open wounds found ways to conceal the smell. I let no one to get close enough to share my secret.

I perceive myself to be a well-informed person especially on subjects that affect me or the people around me. I ask questions, research find out all I can. This was not the case with HS. I kept that in the shadows of my life I could not share it for fear of being ostracized.

That my friend is what I believe to be the foremost hurdle to a cure. A cure cannot be found if the disease is not studied on a large scale. With every person that comes forth the numbers of correctly diagnosed will be increased, which is no easy feat in itself. I was misdiagnosed for more than thirty years and there are so many that will never see a doctor. About ten years ago I saw a Doctor that knew enough that after repeated treatments of cutting, draining and antibiotics with no improvement to send me to a dermatologist and this is when I found out I had HS. The Dr. explained it to me as much as he could he was still just learning about it.

I have been a willing lab rat for years now. I have tried creams, shots, surgeries and pills hundreds of pills in different combinations. Some have helped some have aggravated my condition and some came with very harsh if not detrimental side effects but all have failed so far. HS has denied me much and caused me to fight for the rest. After so many years I am losing ground I was forced to retire give up the profession that I spent half a lifetime to excel in and has left me incapable or just undesirable for employment.

I am not a doctor. I have very little knowledge or control of what steps to take to halt or even slow down what my body is going through I have to rely on the medical community to find the solutions and I know that HS is not a priority in the big picture. If there is to be help for me and others that have this horrible disease it has to be publicized. If you have HS or if you know of anyone who might have HS see a doctor about it. If you are seeing a Doctor make sure they know about HS. We have to stop being ashamed of what is happening to us and seek help. The higher the number of people being treated the better odds of a cure. That is my hope anyway.

People compare HS to other invisible diseases such as Crohn’s or Fibromyalgia incorrectly. HS is not an invisible disease it is just very well hidden. It is very simple if you do not actively seek help or hide from everyone the fact that you need it, you will never get it. Put up flyers, send emails, join groups, or just write long ass posts like this one. Don’t just sit and bitch about how HS has screwed up your life do what you can witch is always more that you think you can fight it and get the word out.

John Herbert
50 years living with Hidradenitis suppurativa
Image: shadow people 34×24 oil  ( view all of John’s 2015 art )

Also see: Living a GOOD LIFE with an Autoimmune Disease


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