I’m not a liar, but I’ve learned how to lie

Whether you have hyperhidrosis or not, you can probably agree that it’s no fun talking about sweat- especially when it’s your own. Sweating is a fact of life, but let’s face it- it’s embarrassing!

With hyperhidrosis, there’s nothing I can do to help the sweat. It’s a condition I have, and it’s not my fault. But I am not about to get into this huge conversation with every person I meet to tell them that.

I know from experience. When you start a conversation like that, it’s not just a simple: “I have hyperhidrosis”. Oh no. You can’t get away with it that easily. Many people have never heard of this condition, so whenever I start a conversation like that, it usually lasts 15 minutes or more. People are curious, which is great. However, what bugs me the most about these conversations is feeling like the person is not taking it seriously. I feel like they’re thinking, “It’s just a little sweat”. That’s one reason for this blog. It’s to show people how much more than “just a little sweat” it is. Hopefully you’re starting to realize that it’s as much psychologically hindering as physically.

Anyway, back to my story. I don’t want to tell every person I meet about my condition. So, I lie.

Two quick examples before I talk about something a little more recent that inspired this entry.

First- I once had a boss who loved to give high fives. I think that’s great…but for someone with hyperhidrosis, this is one of our worst nightmares. I noticed that he was a “high fiver” from day one,  so I was a little bit on edge every time I felt a high five coming on. I was generally okay. Most times I would wipe most of the sweat away or change the high five to a fist bump. One day, I couldn’t do this. It came totally off guard, I had come in from doing some work in a different room. He high fived me, waited a few seconds, and then said, “And you washed your hands?” What could I say but, “Yup.” Okay guys, this is the dumb stuff that people with hyperhidrosis deal with every day. You probably think I am being crazy talking about high fives, and yes, as I’m writing about it, I think it’s pretty silly too. Until I remember how hurt this experience made me feel that day. It may be small, but it sucked.

Next- my hands sweat so much, I usually can soak through a pad of paper. One day, one of my staff needed paper and with out thinking, I offered mine. Oops. She said the paper was all wet. So, of course with out hesitation, I said, “I spilled water on it.” She accepted the excuse. In the long run, these things aren’t really a big deal, but it makes me feel angry and sad. I just wish I could be normal.

Finally- I recently had a terrible experience at work. I was being trained in a specific computer software I was unfamiliar with. I sat at my desk on the computer and the woman training me stood looking over my shoulder. Unfortunately, there was a lot of training that required the keyboard. Sometimes I don’t anticipate when I am heading into an awkward situation and this was one of them. My fingers were literally leaving puddles on the keys. And obviously she could see it, we were both looking at the keys! My heart was throbbing in my head, I could feel myself blushing, of course I was sweating more and more. My mind was racing, I had no idea how to lie about this one! Seriously, what would you say? I was trying to think of a lie that would explain why my hands were doing this. All I could come up with was, “Sorry, my hands are so bad today.” What?? What does that mean!? I have absolutely no idea what she thought and what she thinks to this day. How the heck do you explain that away? I’m so frustrated reliving it even now! Anyway, she didn’t mention anything at all. So that’s the end of that story for now.

I bet that for people with this condition, lying is much more common than you think. It’s just the easiest thing to do. If I want to tell a person I have hyperhidrosis, it’s usually a person I have known for a long time and feel comfortable with. I usually try to make this “talk” special because it’s something I don’t tell many people.

When I was first starting this blog, I was all enthusiastic about bringing hyperhidrosis into main stream awareness. I was talking freely about it on the subway in Manhattan to my boyfriend. He stopped me abruptly, confused at what I was doing. I never talk about this stuff in public. I said to him, “I’m okay with it now! I’m trying to come out with it! It needs to be done!”

Easier said than done. At Christmas, my own extended family spoke about my hyperhidrosis with me. This was mostly because I am planning on getting surgery soon for it- but more on that later. Some people knew I had it, some people didn’t. I felt “put on the spot” as my shaky, nervous voice described what I had been living with for the past 24 years. Believe me…it’s harder than you think. I didn’t want the spot light on me…especially for sweat.

If you have hyperhidrosis, I want to know what you have lied about regarding your condition. Please feel free to comment.

Thanks for reading,

Caryn Joan

Uncomfortable in my own skin.

Let me tell you a little about myself.

I am a classical musician and just graduated with my bachelors and masters degree in flute performance. I perform often and I am an associate box office manager at a music conservatory in NYC.

Since I work with my hands all the time, my hyperhidrosis is my largest obstacle every day.

Now, if you’re not familiar with hyperhidrosis, it is far from your average clammy hand. Hyperhidrosis causes full-out drippy, puddle-forming sweat. It’s fast acting and can transform a dry hand to a drenched one in 5-10 seconds.

I travel daily with a towel in my purse, trying to be as discreet as possible as I soak up the sweat. I bring a fan to work- telling people I get hot easily- putting my hands to the fan as if I’m warming them by the fire. I use a fan year round. I have one pointed towards my hands now to allow easier typing. I hate feeling like I’m breaking my computer by sweating all over it. If anything helps hyperhidrosis for me, it’s the constant strong flow of cold wind.

You might think that Hyperhidrosis would only affect social situations: hand shakes, holding hands, high fives, etc. This is so true it can easily make anyone with hyperhidrosis an introvert. Examples of these situations will no doubt be written over and over again in this blog. The effects of HH are endless, but let’s start with this:

You probably know what it feels like to shake a sweaty hand, but do you know how it feels to have one?

Here’s my experience:

First, my hands start to get all prickly feeling, like they’re about to fall asleep. Then it starts. You can see it. My hands get to that average clammy stage, then all of a sudden have a shiny gleam on them. You can see droplets of sweat on the tops of my fingers even. When I play the flute, sweat will drip down to my elbows.

Physically, my hands will swell. I buy rings a full size larger than my actual ring size to accommodate for the swelling. When my hands have calmed down, my rings are practically falling off.

There’s no “wiping” the sweat off. How many times have I been told, “just wipe it off”? The sweat is so fast generating, that it is literally constant. Sure, it helps…but maybe it’s really just the satisfaction of holding onto something that can absorb. Seriously…having HH and typing on a keyboard where the sweat has no where to go but form little tiny puddles on each key? It’s ridiculous.

I never know what to do with my hands, even now. You have to be careful wiping your hands on your clothes. I’ve learned from experience: touring Europe with a high school band, ruining my uniform as it turned white from the salty sweat from my hands. Denim is fine, but even that can get gross.

Sometimes, I clasp my hands together. It is uncomfortable for me to hold my own hands. When I was a kid, as part of a game, friend’s would ask: “If you could change one part of your body, what would it be?” Always to myself, I’d wish for new hands…a hand transplant…to just cut my hands off at the wrist and get new ones.

My boyfriend, who is fully aware and accepting of my hyperhidrosis, will hold my hand when it’s a sweaty mess. He says, “I don’t care”. But I care. It feels terrible to me. I think it’s the fact that there is really no where for the sweat to go. To just have it lingering on my skin, I feel so helpless. Maybe it feels like a runny nose you can’t just wipe away.

As for the swelling, I have an experience from my past I will just never forget. I was in All-County Band, playing my flute in high school. My hands were so swollen- really the most swollen I can ever remember- that I could not even feel the flute underneath my fingers. I felt like I was wearing thick rubber gloves. Even today, when my hands swell, I know I cannot move my fingers as fast as I need to. They are sluggish.

My hyperhidrosis makes me angry, frustrated, and sad. Yet, it does give me a pride unlike any other. I never gave up with the flute (who knows how I made it through). Every day I am so proud of myself for what I have accomplished regardless of my disability.

Caryn Joan

My Secret.

I have a secret.

I’m not so sure how ready I am to share this with the world, but it needs to be done. If not for me, for people out there who are like me.

I have been living my whole life with a medical condition called Hyperhidrosis.

According to the A.D.A.M Medical Encyclopedia, “Hyperhidrosis is a medical condition in which a person sweats excessively and unpredictably. People with hyperhidrosis may sweat even when the temperature is cool or when they are at rest.”

There are several types of Hyperhidrosis, including palmar (hands) and plantar (feet) that effect me most.

There’s always been little knowledge of this condition because people don’t like to talk about it. Talking about sweating is so taboo. It’s embarrassing. It is the reason I have lived with this secret my whole life. So little people in my life know that I live with hyperhidrosis. I haven’t told certain family members or even close friends. So, this blog will most likely be a surprise to them. I feel like I have two separate lives, always remembering who I have told and who I have not. Well, I can’t hide anymore.

My intention with this blog is to increase awareness of Hyperhidrosis and to provide support to people just like me who suffer from it.

So…why now? Why after 24 years of living with HH have I decided to talk about it?

If you aren’t familiar with the condition, you might not automatically realize how psychologically crippling it is. I am coming off of a really bad summer in the heat of New York City. The heat brought on so much excessive sweating, it was very difficult to live. I became very depressed and knew something needed to be done. I am so passionate about helping people with this condition and bringing awareness to it. In the past, I had tried setting up online support groups, but no one had joined. I felt stuck. I couldn’t invite my own friends because I didn’t want them to know I had the condition. Even now, as I write this blog…I’m thinking of keeping it private for a few days until I get the courage up to make it public.

This entry is just the beginning. I plan to write about my everyday struggles and tell stories of my past. I need this blog to illustrate how this condition is a real disability. I can tell you that my life is forever changed by it. I’ve lived with it my whole life, but I can’t even do the simplest things like hold a newspaper with out getting ink all over my hands. I have adapted to living in this world with my condition, but I don’t want to adapt anymore. I shouldn’t have to. I have the right to live my life the way I want to!

Deciding to write this has been difficult on my part. Please send your support, and if you know anyone with hyperhidrosis, please share this blog with them.

Caryn Joan