Now that you have some tips for telling people about HH, I present you with a challenge: Tell someone new about your HH this week!
Telling people about my HH has made me feel more comfortable in my own skin and has helped me cope with the emotional aspects of the condition.
I am less anxious when I go to rehearsals with my quintet because they know why I need to use a towel sometimes. I am less embarrassed and self-conscious as I sweat uncontrollably in the hot summer sun when I’m out with a friend because they know I can’t help it.
Now, I want to hear from you!
Please leave a comment about a time you told someone about your HH.
How did you do it?
What was their reaction?
How did you feel?
Did your relationship with that person change?
How is your relationship with that person now?
About 5 weeks ago, I started taking Irish Step dance lessons.
I used to dance (tap and jazz) and I have always loved “rhythmic” dance.
Anything with a tap on the shoe to make percussive noise, I’m there.
Maybe it’s the musician in me.
I’ve always been interested in Irish Step, especially hard shoe.
Right now, since I’m a very beginner, I’m starting with soft shoe.
This means, there aren’t any percussive sounds.
The shoe is a soft leather with no taps on the bottom.
Anyway, I was so excited for my first class!
I hadn’t taken dance in years, and was happy to start again.
As soon as I got there, panic hit me.
Have you ever seen Riverdance?
All of those dancers hold hands…like the whole time!
Why didn’t I think of this??
I’m ready to bolt, but wait and give it a try.
Thank goodness, this class is different!
It’s more “solo” Irish Step.
There are other people in the class, but we just keep our hands down at our sides.
Haven’t had to hold a hand yet!
This experience brings up an issue that many HH sufferers stress about.
Have you ever wanted to do something but didn’t because hand holding may be involved?
I used to be a gymnast.
Okay, I was 5.
But I could pull off a mean cart-wheel!
Recently, around the time of the last Olympics, I read the results of a HH survey asking:
“What would be the worst Olympic sport for people with HH, what would be the best?”
Overwhelmingly, the results were:
Worst: GYMNASTICS | Best: SWIMMING
Can you imagine gymnastics with HH?
The uneven bars? The balance beam?
I don’t believe I quit gymnastics because of my HH.
I think I was just being a kid and didn’t want to do it anymore.
Sometimes, I wish I would have continued.
But I cannot imagine I would have any success due to HH.
I love dancing, but I would never take ballroom or salsa.
I used to want to clog dance.
My sister took it and I really enjoyed watching her.
But I wouldn’t ever dance ballroom/salsa/clogging because there is hand holding involved with some steps.
Why would I voluntarily put myself in that position?
I was penciled in at Columbia Presbyterian Hospital to get the ETS (Endoscopic Thoracic Sympathectomy) surgery in December 2011.
I was all for it at first- too frustrated with living with myself. Every day, struggling with the smallest of tasks.
All of my friends and family seemed pro-ETS. They just wanted me to be happy and live a better life.
At the last minute, I cancelled my appointment.
The reason being the potential side effects.
I began reading horror stories of compensatory sweating. Stories where people began sweating all over their bodies, much worse than their hands had ever been.
Some stories were about people who didn’t leave their houses anymore, couldn’t wear their usual clothes, or refused to hug their loved ones. Many stories were about people who became depressed.
My boyfriend, Francis, started to worry about this surgery. He wanted me to be happy, but he didn’t want me to change. He thought the potential side effects were way worse than what I was currently dealing with. We both didn’t want to risk the compensatory sweating.
My hope is that the surgery continues to improve with a lower risk of compensatory sweating. If this happens, I will most likely get the surgery.
I’ve had a goal recently to start working with children and HH. I want to go into the schools and educate teachers, nurses, parents and students about HH.
One goal is to adjust lesson plans to remove activities that require hand games or holding hands with other students. This could include activities in gym class such as dancing or certain types of tag, classroom games of getting to know each other, and/or holding hands with a buddy when walking down the hall.
I remember as a child going through Elementary school especially, other students didn’t want to hold my hands because they were wet. At my young age, I still didn’t know what was going on with me. I didn’t know I was different from other kids. It was confusing and hurtful when people would call me gross.
I feel that as an alternative, schools could start by making these activities optional and the buddy system could be altered by using a rope to hold on to, instead of someone’s hand.
Ideally, by educating about HH in the schools, teachers will know what to look for in HH sufferers and be able to address the condition with the student and parents. If teachers find a student with HH in their class, their lesson plans could be altered accordingly and special attention could be given to the child. For example, I know that I struggled a lot writing with pencil and paper in class or working on art projects. The teacher would be able to offer the student additional time to complete projects, and offer alternatives such as: going to a separate room to take tests, give the child a paper towel or cloth, let the student write with pen, etc.
Recently, I spoke with a friend of mine who is currently earning her music education degree. She wants to be a music teacher in public schools.
When I spoke to her about my idea to remove hand holding from schools, she disagreed. If I understood her correctly, her theory is that children need hand holding to feel safe and connected to others. Also, if someone in the class had HH, it is the teacher’s responsibility to let the other children know that the condition is not a big deal, and that holding the person’s hand is okay.
I see where she is coming from, but I just cringe when thinking back to when I was a kid. It was really painful to feel different and gross.
It’s time to get a little real here.
I know that sweat itself doesn’t smell.
If this is news to you, it’s true.
Sweat doesn’t smell, but the bacteria on your body will break the proteins of sweat and cause a smell.
A few days ago, I was in a meeting and I was sweating a little more than usual.
I had another appointment soon after the meeting and was worried I wouldn’t make it out of the meeting on time.
When I was excused from the meeting early, I didn’t want to get up before everyone else because I had a feeling I was going to trail a bad scent.
So I stayed put until everyone left.
This experience just brings up something else that I and people with HH have to deal with.
I’m paranoid and self-conscious.
I don’t know if I really did smell, but my mind was telling me that I did.
HH really effects your mental state of being.
To try and help the smell, wear more absorbent fabrics. Cotton always works will for me.
It is also very important for people with HH to shower often (once a day is fine) and maintain good hygiene.
When I was younger, I would buy scented hair products and body sprays to mask the smells of my HH. I’m sure I put too much on all the time!
Now, I buy scent-free laundry detergent because I think the smell of HH mixed with scented detergent is worse!
If anyone has any other suggestions, please feel free to leave them!
I was very frustrated at work today. I’m not sure if it’s hotter in my office or if I’m just stressed, but my hands have been constantly sweating. The sweating was really irritating me as I typed on my computer keyboard.
I decided to do a Google search to try to find a computer keyboard with a fan positioned at the hands. I have a fan on my desk now, but it doesn’t help much because the airflow is not able to reach my hands.
What I found was a gamer keyboard. What an ingenious invention!
Gamers’ hands get sweaty, and they may not even have HH. The fan is built-in to the upper left hand side of the keyboard and keeps your hands cool as you type.
I’m not a gamer, but I still want this keyboard! I wish that general keyboards would start offering this fan option. I don’t need all the other fancy “gamer” features.