Living a GOOD LIFE with an Autoimmune Disease

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I am writing this for all the young people thinking that their lives or over because they have HS, my hope is by the end of this you will realize it doesn’t have to be. I am not saying your lives won’t change or you won’t have to make sacrifices, a lot of sacrifices, but you can have a full and happy life.

I was diagnosed with HS less than 15 years ago but I have lived with it for over 50 and I am still here.

Hidradenitis Suppurativa (HS) is a common (though rarely diagnosed), chronic skin disease characterized by clusters of abscesses or subcutaneous boil-like “infections” (oftentimes free of actual bacteria) that most commonly affects apocrine sweat gland bearing areas, such as the underarms, under the breasts, inner thigh.

I have been employed in hundreds of fields for over 45 years including a career of 18 years. Currently living on a bit of land the bank, I and my wife (a life time sufferer of Lupus and its cousins) have owned for almost 20 years. Now that’s a lot of years and not all good for sure.

If I had to put into years how often HS or other health issues have put me down completely, I would say less than 2. The way I see it most of the time the pain is there if you are on your back or on your feet and I can cope better if I am occupied. Even with stays in the hospital and 10’s of surgeries I refused to stay on my back (the breakouts on my butt hurt too much) so I bust through therapy and got mobile asap. I learned to apply dressings 1 handed left or right. I became adept with a scalpel, packing and a drainage wick. Whatever it took to keep my life regular, I did. Sure I would be missing a lot of work sometimes paid and sometimes at the cost of the current job that’s why I have had hundreds of types of work. Until my last two employers I have never had a job for more than a year. But if your flexible, willing to learn and are not too proud you can find work.

I am lucky I found a partner living as two is easier in a lot of ways if you act as a team. But I met her in my mid 30’s so both of us had a life dealing with our diseases alone basically. I hid mine from everyone and hers was ignored. Although we are both retired on disability we manage to keep goats, chickens, dogs & cats plus my wife maintains a vegetable garden. Not bad for two people Hidradenitis Suppurativa and Lupus. Not easy ether we have our days when we are down between us we make almost a whole person. A partner is the best.

Not a bad life there are so many afflictions in this world many times worse than mine or yours. I know that now but I spent a lifetime knowing only my pain and shame. Some of the things to keep it that way were ridiculous.

I was at a party once when a big bastard under my arm burst open what a mess. I acted like I was drunk and fell in the pool to have an excuse to go home and change. I rode a bike so I wouldn’t be close with people in cars, in gym I dressed early or late. For a few years I lived as a homeless by choice just to avoid everyone I knew. And if I met someone the only way I could have sex was fully dressed.

Does any of this sound familiar? I had no idea at the time what the hell was wrong with me so how could I expect anyone else to so I kept it hidden. I want to you know what it took me some decades to learn.

First off although, at times you will wish yourself dead I have never known or been aware of an HS caused death. Just death from giving up. Now Sepsis yes so take care of open wounds.

HS is NOT your fault! HS is an autoimmune disease, a disease with a stigma in league with leprosy but unlike leprosy it cannot be transmitted and as of yet there is no cure. I make it sound bad because it is, you all are in for a fight but if you are reading this now you are half way to victory “awareness is the cure” not just for those with HS but everyone in their lives.

You will be embarrassed, shunned, people will be revolted by you that is a fact. Hindsight is for the old to share with the young, I have lived it so I can give you some pointers.

Panty liners or feminine pads, not just for women, they work all over your body always carry some.

Mentholated jelly (don’t put near wound) covers up the smell very well and people stay back if they think you have a cold.

Always carry some extra clothing and ware dark colors, loose clothing, I would go with a Moo-Moo if I could get away with it.

One handed arm pit bandage. On clean surface layout enough overlapping gauze pads to cover the area needed, cover gauze with paper-tape (I found this best for skin irritation) let tape extend 1 inch or so over all 4 edges turn it over put a nonstick-pad with medication in the center reach for the sky and with one hand slap it on and pat all edges to stick.

There are adhesive pads for large areas but I have found them to take skin with removal.

Purchase a scalpel and keep it with you for emergency lancing if I have the time and can stand it I use hot compresses to bring it to a burst.

Get a good dermatologist or at least an internal medicine Dr. that is aware of current HS treatments.

If you find a good employer let them know what is going on they may work with you on time off and activities that you can do when you a bad off. An smart employer wants to keep good workers.

And most important something I wish could have done is talk to everyone you care about and let them know what is going with you. This is where you will find out who really cares about you. After the pretenders leave the people left will want to help you, let them.

HS is different for everyone who has it. The effects and the treatments aren’t set in stone. Try not to treat yourself from what you hear or read talk to a Dr. I am currently on Humira, Dapsone, Dutasteride and Doxycycline. I guess you could say I’m HDDD. I have to be very careful to not over exert myself or stress out both cause breakouts for me. I am still hoping for a cure and the more we all learn about this the closer we will be.

You can have a full life it is hard and painful but is it worth the effort. It always helps me to help people that have it worse than me it gives me a perspective witch is hard to attain in solitude. Please get out there, don’t keep yourself isolated humans don’t do well by ourselves we need people around us for support, guidance, companionship and love. Every day think of one thing you would like to do and then find a way to do it. At the end of the day you may not have accomplished it, but you will find that your pain subsided a bit simply because your mind was occupied and not dwelling on it. Don’t lay there in despair letting HS take your life away. Learn all you can about it and keep going past the pain. You will have a happy life.

Thanks.

John Herbert
50 years living with Hidradenitis suppurativa
view all of John’s 2015 art


Also see: John Herbert and 50 years of living with Hidradenitis suppurativa.

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