ORIGINAL POSTED TO FACEBOOK
30 May 2015 @ 02:21
I have been posting items like these to my personal Facebook wall. Posting to several hundred friends and family that never knew I live and was born with Hidradenitis Suppurativa. Until about a week ago. I challenge you to do the same. I think any HS patient would understand if you could not, but feel free to share my story. I will be fighting for everyone of you (HS patients) for the rest of my life, at any cost.
Fighting for awareness looks a little like this…
Click the unfriend button, delete my phone number and forget where I live if you don’t like or are uncomfortable with what I am recently vocal about. You have a choice. I don’t anymore and don’t care. I have made a choice to help myself and fight a losing battle for my health and others – I will never stop.
Knowledge is power. Everyone and their families should have effective knowledge options for treatment and support. We owe it to future generations to not let this monster hide in the shadows another day! It needs to be researched and studied and talked about.
Everyone knows somebody that has been affected by this horrible disease, chances are they are keeping it a secret, if you think you do not. Over 1 million have been diagnosed, estimates suspect much more due to the vast majority of patients that are reluctant to seek treatment due to stigma.
I kept this secret for 20 years, the people I did tell, thought it was something else. It never made any sense, but I couldn’t talk about it without almost having a heart attack and breaking down. The vast majority of members in private Facebook groups I have joined also had a secret, by the thousands. The now over 200+ doctor to doctor clinical studies I have read tell a very similar story. The HS Foundation advocate that I spoke with and is supporting me personally, with most of his body rotted away after living with this for over 49yrs didn’t tell anyone for almost 15yrs. The advocate from the Rare Diseases of America Organization I spoke with today, a stranger that is also supporting me, also had a similar story. We cried together. Sure there are physical scars that go away sometimes if you’re lucky to catch a few months healing, only to return like clockwork as open wounds – as sure as the leaves fall from the trees when it gets cold. The internal ones never go away, and are much worse. Do a Google image search if you have a strong stomach and want to understand what I am telling you.
I weep and hurt to the core of my heart for those people, and it has only been not even 2 weeks since I learned why I have been the way I am for the last 20 years. It doesn’t explain everything, but a massive part of my life without a doubt since I came into early adulthood.
Everyone thinks I am crazy or unhealthy obsessed. Not sleeping for days studying. Well, I am. Living 20 years in silence hiding this has been much worse than the last 2 weeks opening up and finding other people like me who understand, finally starting to seek help at all costs. Knowing that I am not alone. Being honest and transparent, at risk to be shunned and judged, is my current battle. I was naive, what I read and what patients have told me, how mean and dismissive people can be. I didn’t really get that until yesterday starting to deal in person with the medical community locally.
Brings a whole new meaning to the phrase, “people fear what they don’t understand” to a new level for me.
It’s not fair, it is a disease we are born with, it is not contagious. There is no choice or freedom involved for these amazing people. It may look like we are extras for the next season’s Walking Dead, but behind what we wish was makeup are just normal people living in chronic pain and a broken mind due to it. Miserable people at times that hurt others, even the ones we love, because we are trapped and can’t take a vacation from pain, anger and anxiety – ever. Its nothing less than torture for us and those around us. The disease never shuts off, it just moves around and waits for a new or old place to get some fresh air. I am learning to not expect understanding from anyone, just to be dismissed and second guessed, doubted and made fun of behind closed doors. Those who you even think are closest to you pretend they haven’t turned their back with a smile on.
Don’t bullshit a bullshitter, I know how to lie. I practiced lying and hiding everyday for decades. I am a expert. We are experts at hiding things, specifically pain.
Something has to change, until my last day I will fight for myself and the estimated 1 out of every 100 people who live with HS. I have declared war and will never stop. We as a community don’t have proper treatment or awareness, if any at all, for a genetic and chronic disease discovered over 150yrs ago because people don’t talk about it or can’t. It is much worse than most things out there that people easily get compassion and help for.
Steve Jobs and Karl Marx lived and died with what was potentially HS. Why do you think they were know to be short tempered, aggressive and obsessed? Totally obsessed with what they loved, engrossed in something to take their mind off of their decaying bodies. Greatness does come from pain and sorrow I guess.
I am done crying and being emotional (at least until after lunch tomorrow). I’m furious and determined. I will accept nothing less than WAR to create awareness and compassion for those who suffer without choice or a cure while living in hell on Earth.
My name is Ron, I used to be a Graphic Designer. I am now trying to be a HS patient, and when I get better, I will be a HS Warrior fighting for what’s right. Fighting for these people who live their lives suffering, ashamed, shunned and afraid – for no reason at all other than mother nature. I won’t stand for being doubted, judged, shunned or second guessed for once more second about HS. I suggest those who question me keep a distance, you won’t like how I react. I am done pretending to be something I am not, I am done living with something that makes me someone who I am not supposed to be.
Ronald James Bercume Jr.
20 Years living with Hidradenitis suppurativa
PS – Please share this post. If you can’t, I think we all understand as HS patients. But, do feel free to share mine, send it to your local paper, the local radio station or print it out and throw paper airplanes out your car window on the way to the hospital or work tomorrow. I don’t care who knows, I don’t care who I loose in my life who can’t handle it. There are too many lives at stake.Tags: Patient Blogs Patient Stories