At the risk of turning this into "Fat
and whines about medical problems", I'd like to talk about Hidradenitis
Suppurativa (HS) which is a condition I have had since puberty, but
took nearly 18 years to diagnose properly. I would expect that most
people are unfamiliar with this disease, so here is a link to the
basics:
Everyone
back from reading that? Awesome! Moving on. The reason that I want to
discuss HS is because of the stigma and shame that goes along with
having the disease. It is not a disease exclusive to fat people,
however, doctors often recommend weight loss as a way of treating the
condition (though this is extremely ineffective). The reason weight
loss is suggested is because HS lesions are often found in areas of the
body where there is skin to skin contact: groin, breasts, armpits,
buttocks etc. This often gives me a chuckle because I think, quite
literally, I would have to be dead to lose enough weight to not have
skin to skin contact in these areas. As I was saying, HS is not a
disease exclusive to fat people, however, there are a significant
portion of HS sufferers who are fat, which often complicates the matter.
My
personal experience with HS was that it set in around puberty (which
seems to be a common thing). It's something I remember both my Dad and
Mother and sister all struggling with (genetic component anyone?). I
felt extremely embarrassed by the lesions. I mean, here I am, just
starting to think about my body as a sexual body, and I end up with
infected, painful, ickyness in all the areas that are suppose to be
"sexy". Doctors prescribed a never ending parade of various acne
medication, suggested weight loss, and even suggested that I was simply
dirty! This, unfortunately, is a common experience for HS sufferers.
If they are brave enough to go to the doctor, the doctor's ignorance on
the issues of HS often leave to the patient leaving feeling shamed,
dirty, and possibly even responsible for their condition. "If only I
wasn't fat! If only I didn't have so many dirty skin folds! If only I
took better care of myself, ate less exercised more!" These are all
thoughts I have had myself, and thoughts I have heard expressed by
fellow HS sufferers. We are told that eating the wrong foods makes it
worse. Lack of exercise makes it worse.
And
let me just rant on that point for a moment - have you ever tried
exercising when you have a searing hot golf ball of pain between your
thighs, or under your breast, or armpit? Oh yeah, let me just tell you
that it is not a super motivating factor to worry about whether, if you
can manage to suffer through the pain, you may inadvertently pop your
alien golf ball and end up with a pussy mess in the middle of the gym.
And I would also like to point out that the sweat generated by exercise
(or even mildly warm weather) can often exacerbate a flare up.
Let me just highlight a few important points about HS
- There is no cure
- HS is not the result of poor hygiene (though poor hygiene could exacerbate the condition)
- HS is not exclusive to fat people
- Awareness of this condition needs to be raised to help destigmatize and support those of us who have this condition
So this blog post is my way of coming out of the HS closet and saying: I'm here! I'm lumpy! I'm still awesome!!
Hi! I have HS too, as does my sis. I get most legions on my inner labia (can we say "ow!)". I could weigh a hundred pounds and I'm still going to have skin-to-skin contact on my inner labia. So yeah. Weight probably isn't as much of a factors as doctors say it is.
@CTJen - first let me say BOOKMARKED! You are totally on my daily reading list now :) Yay. Second oh my god ow! I sincerely sympathize with the pain that must bring. Third, thanks for sharing the comment on this post. I wasn't sure what the response would be to a subject like HS. It's a bittersweet joy because it's great to know there are other people out there who understand and it sucks to know that there are other people who have this bullshit affliction and have to live with it. I wouldn't wish it on anyone.
Hi! I also have HS and completely emphasize with how much it sucks. I had a lesion suddenly get much worse than they had ever been before, /after/ losing 70 pounds, spurring me to go to the doc about it and getting diagnosed. It's so not about being fat. Can extra weight cause more physical rubbing and pressure on an already existent lesion? Sure! But that's not the same as being causative and all the talk from other HS people about diets and gluten-freeness make me bang my head against the wall. It's auto-immune and foods can certainly be triggers but there's not one common miracle diet and not everyone's trigger(s) are food related. Anyway, yes, it's a terribly frustrating disease and I start IV Remicade later this month as the Humira isn't working. I wish you all the best of luck!
@ Christy -
Thank you for sharing your story! I hadn't even begun to touch on the topic of "food as medicine" yet. I am certainly right there with you banging my head on the wall. While I am sure that food as medicine works for some people, and whoohoo if it does, but for most, that just inspires a whole new host of problems.
I hope that you are able to find something that works for you. I have not herd of Remicade. Thank you for posting a comment and sharing your story. HS is so common, yet so not talked about in "polite" society.
I get a form of HS (infected sweat glands -- ouch!). I don't know if it will work for you, but I have found that washing with homemade lavender or goats' milk soap really helps prevent outbreaks. I'm not sure what ingredient is helping, but store bought soap doesn't work as well as the stuff I get at the farmer's market.
@ Liat -
Thank you for stopping by to comment. I will definitely try your suggestion! I find that the more gentle approach works better for me as well. I tried tea tree oil for a while and it was so painful!! We have an excellent farmers market here so I will take a look around. :)