Oh! I’ve never told you about the other symptoms of Hyperhidrosis?

If you’ve never heard of HH, you probably will never guess that these symptoms come along with the excessive sweating.

1. Uncontrollable Facial Blushing (and what I call “blotching”).

I really wish that this symptom was not a part of HH. When I am anxious, I will get red blotchy spots all on my neck and chest and my face will turn beet red. I understand that this blushing is brought on by anxiety, but I know that it is worsened by having HH.

I’m a classical musician and sometimes solo performer. As such, I’ve worn strapless gowns on stage and am center of attention. How embarrassing is it to have huge red spots all over my neck and chest? Especially when I don’t have them normally. My friends always notice it, and that makes me feel very self-conscious. I just tell everyone I get hives. But I know they aren’t hives. But I refuse to wear turtle necks to cover it up. I shouldn’t have to adapt to this condition. Just thinking about adapting makes me angry. Same as I shouldn’t have to move to a cooler climate for HH. If I do, then HH wins! I can’t let HH win over me!

2. Cold Hands and Feet.

Aren’t normal people hot when they sweat? Not people with HH. We could be sweating in the middle of winter.

What’s interesting about HH is how cold it makes hands and feet sometimes, even in the most drastic heat. My hands will get so freezing that it is uncomfortable for me to rest my hands on my own arms. Having freezing hands just adds another level of insecurity for me, especially when shaking hands. It’s a double whammy…like my title says: As if uncontrollable sweating wasn’t enough.

As always, thanks for reading and please share with others,

Caryn Joan

Have you ever realized that you’ve blocked memories from your past?

I have.

Last night, as I was talking about my childhood with my boyfriend, these memories started flooding back to me.

(This is going to be a long post…)

I remember when I first realized I had Hyperhidrosis. I was in 1st or 2nd grade and had asked my mom why my hands were so sweaty all the time. She told me that I’ve had sweaty hands and feet since I was one year old. She told me how I would leave footprints on her when she stood me up on her lap. The doctors had tested me for Thyroid problems because that could cause excessive sweating. But all the tests were negative. My sweating was just ignored because my health seemed normal. I was self diagnosed with HH in middle school when the internet became readily available and I was able to research what was going on with me. I actually wasn’t officially diagnosed by a doctor with Hyperhidrosis until high school when I decided I needed some extra help in coping with my condition.

Back to my young self:

After my mom had told me about my hands, I was upset. “Why didn’t you ever tell me?” I asked her. My mom hadn’t wanted to tell me because she didn’t want it to affect my life. I understand this to a certain extent because when I don’t think about my HH, my hands sometimes aren’t so bad. Maybe if I didn’t know I had a problem, my sweating would fade.

Once I knew that I was born with this condition, things started to make sense. I understood why kids in school didn’t want to hold my hand. As a youngster in school, we often had to hold hands with our “buddy” to go to the lunch room or music room. We often had to hold hands for games played in the classroom. I vaguely remember kids saying “ew” when they would hold my hand. Kids can be so cruel…without even realizing it. I think this is why I sat down and had that talk with my mom in the first place. I knew that something was wrong with me. I knew that I was different, but I didn’t understand why.

In 3rd grade, I have a memory of working on a class arts and crafts project. For some reason, I remember having to make hole punches and use the little punched out circles. I remember not physically being able to do this. Think back to my previous post: I struggle doing things with my hands that require small pieces. Plus, all those little white punched out circles were sticking to my hands. There was no way I could do this project. I started to cry.

I cried almost every day in elementary school. I became a perfectionist in my anxiety to be able to be normal. I became shy trying not to cause any additional attention to myself. I’m not going to say that my HH was the only reason I became this way, but I will tell you that I’m sure it was a big part of it.

By the time I hit middle school, I had cried myself dry. I didn’t cry again for years. I was numb to it all and worried about that sometimes.

Middle school was one of the worst times for my HH. I had terrible under arm sweat. I would literally have VERY visible sweat marks ALL the way down to the bottom hem of my shirts. I went to the nurse all the time, probably about 3-4 times a week. I would tell her I had a “stomach ache” every time. In all reality, I was just trying to cool off and be away from my peers. If my peers saw me like that, I’d have a big problem. I was so anxious of my secret being found out that I probably made my sweating even worse. I still remember one specific time…I was wearing a pink long sleeve t-shirt that said “Paris”. I had caused the sides of my shirt to become dark with sweat. As I walked to the front of the room to my teacher to get a pass to the nurse, I swear I heard kids giggling in the classroom. Maybe it was just me…but this is what my memory is telling me. Every day, I would take extended nurse or bathroom breaks just trying to cool down.

Middle school was also the first (and only) time my teachers had to be notified that I had HH. I don’t think I’ve mentioned this fact about HH yet in my posts, but, writing with pencil on paper is sometimes impossible. The sweat from my hands causes my paper to become curled up, but that’s nothing compared to my struggle with pencils! If sweat from my hand drips on the page, my pencil will not write in that spot. It’s just impossible. Think about getting a bead of water on your paper, then trying to write on it with lead. Even today, if I need to write something and my hands are bad, I need to put a piece paper (I’ve learned that card stock or thicker paper works best) or a towel under my hand. So, my teachers needed to know that I had a problem writing with pencils because so many tests required a No. 2 to fill in the bubbles on tests. They needed to know that my bubbles might not be filled in properly.

I think it was good that my teachers knew, but I’m glad they didn’t make a big deal about it. My mom had a meeting with them about it, and I didn’t have to be there. So, I’m not sure my teachers knew that I knew they knew…

In high school, I was on the tennis team. I remember cutting finger on the canister of tennis balls as I opened it right before a match! I ran to my coach and he gave me a band aid.

I had to tell my coach, one band aid wasn’t enough. I must have been really desperate/in pain/in a rush because I told him that I needed more than one band aid because I have Hyperhidrosis. One band aid was not going to cut it. It would last 10 seconds with HH. I have always had a problem with Band aids in this way. In order to make band aids stay on me, I need to stick them on each other tightly. One bandaid around one half of my finger, another band aid around the other half-sticking to the first band aid and not my skin.

By the way, my coach was only intrigued, excitedly asking me questions like: Do you need to drink more water because you sweat more? Ummm…I don’t think so… Although I do drink a ton of water, just because I love water 🙂

Another tennis related story I have was when I had hurt my wrist. I wore a hand brace for a while. It was like a little glove on my right hand.

I kept wearing this brace even after I was healed, all through the season. Guess why. You’re right! This glove helped my grip of the tennis racket with my HH. I remember one opponent asking me: “Do you mind if I ask what happened to your hand?” I just lied and told her my wrist was still hurt from a tennis related injury.

These have been some childhood memories I haven’t remembered in years. I always knew I wanted to write about how my HH effected me as a kid, but I needed that little memory jog to remember just how much. I must have internally labeled these as negative memories and locked them away somewhere in the back of my mind.

There are so many instances in school that made having HH difficult. Maybe this post will help change the teaching curriculum. Today, I am careful to observe if people are having difficulty with certain tasks with their hands. I look for people who might be struggling, causing them to be in a frustrating, impossible and potentially embarrassing situation. I would never want to force someone to do something that causes them to have such difficulty- physically, mentally and emotionally.

I’m not saying that hand holding or craft projects should be banned from schools. I’m just hoping that people become more aware of HH and are observant of the signs. Don’t force the kids to do something that might make them feel bad about themselves when it’s not their fault. As someone with HH, I want to tell you all who struggle with me: YOU DIDN’T DO ANYTHING WRONG. You are a beautiful person inside and out.

Thanks for reading, and stay strong,

Caryn Joan

Have you ever gotten to the bottom of one of those “New Hire” forms and find it asks if you have a disability?

Well, I came across this question in November when I started my current job.

Do I have a disability? Do I reveal that I have a disability?

Let’s think on that and go on to the next question: “Are you able to complete the tasks at your job regardless of this disability?”

SURE. So, do I write that I have a disability? Nope. Phew, my secret’s safe. Or is it?

For some reason this morning, I was hit with a flashback from my first job at Barnes and Noble. This flashback was inspiration for this entry. It’s of course one of those embarrassing situations I found myself in. Sometimes I think I am destined for embarrassing and awkward situations. Actually, I know that I’m destined for them. It’s the nature of HH.

I was a cashier in the Music section of Barnes and Noble and I remember my hands not being so great that day. As I cashed someone out, the customer asked, “Why are these CDs all wet? I want new ones.” She ran off and got another copy of her CDs and when she came back, I’m sure I got them wet again…this time trying to be really careful not to.

I start to think: “Am I really able to work around this condition?”

I remember struggling so much with jobs that I’ve had. When my hands are extremely sweaty, it’s very difficult to do the simplest things.

I can’t hold objects with out them slipping out of my hands. I remember doing a CD inventory where I had to stand on a ladder and lift boxes filled with CDs. This was one of the most dangerous things I’ve ever had to do on a job. It wouldn’t have been difficult for the average person but, with my HH, I was risking my balance on the ladder by not having good grips on the boxes. I remember being so angry and feeling like I shouldn’t have been asked to do this. But no one knew I had such a disability, and I wasn’t about to tell them.

Also, I struggle assembling things when my hands are really sweaty. Something struck me as sad this past summer on the subway. I saw a man taking apart his phone, removing the battery or something of that sort. It made me sad because there is no way I would be able to do that. I can’t move my hands like that when they are so sweaty. Just imagine how I get with flute playing… Currently, I work as an associate manager. I’m lucky that I can ask my staff to help me assemble things and not have it look like I am incapable. “Assemble” is even a too fancy word for what I struggle with. I struggle with the simplest task of ripping masking tape or hanging a bulletin board. My hands just do not cooperate.

Don’t get me wrong, I am very capable with my hands when they are behaving normally. I usually have a fan with me to ease the swelling and excessive sweating. Sometimes my staff will complain about my fan because they are cold. What can I do though? I can’t be completely out of commission all the time. Then I definitely would not be able to complete the tasks of the job at hand.

Thanks for reading,

Caryn Joan

I was using my computer this morning and was struggling with the keyboard, as usual, because of my hands. I started to turn my desk fan on- positioned perfectly towards my keyboard- to help with the sweating. I realized at this moment that I should take a picture of my hands for this blog. It’s about time you see what you’re reading about.

This is real and came on in about one minute. This is what I deal with on a daily basis and is about average sweating for people with hyperhidrosis. I hope that these pictures give you more of an idea on the daily struggles someone might deal with if they have HH.

In case anyone is wondering, those spots on my hands are a birthmark (left) and freckle (right), something else I consider pretty unique about myself 🙂

Caryn Joan

10 random ways you know you have hyperhidrosis. Yes, all of these things have happened to me. Please keep in mind that I live in NYC as many of these are subway stories 🙂

1. You awkwardly hold the highest handrail on the subway train because the odds of someone holding the sweaty mess you left behind is less likely. *see below*

2. In a crowded subway when you can’t hold the highest handrail, you accidentally make a small sweat puddle on the floor, or worse- on someone’s shoulder…

3. On a hot day, when fanning yourself with your hands, you also get a spray of water…from your hands.

4. At shows, you have to adjust the way you clap at the end of a set as to avoid spraying others with water…

5. You have friends ask you why you are limping when you wear sandals…sandals are dangerous and will hurt you. (Yet, I still wear them)

6. You don’t realize until after you’ve bought the pants and are wearing them for the first time that you have a huge sweat stain on your butt. (Oh, the joys of bad fabric for HH!)

7. You hold your hand out the car window for the entire ride somewhere in desperate hope that it will help dry the sweat because you know you’ll be shaking people’s hands.

8. You can never take the daily newspaper from those guys bombarding you by the subways. Newspaper? With HH?? Not if I want to get ink all over me!

9. You usually can’t feel the difference between something wet or dry, since your hands are wet all the time.

10. Your hands start to prune- and you haven’t been swimming or taking a bath!

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

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

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