I used to tell people that I had HHD because during an outbreak there are some things that I simply can not do, like raise my arms, wear certain clothes, and of course sometimes I would be asked about the bandages on my neck or other areas where they may be visible. I felt like curious people deserved an explanation.
I would spend ten minutes trying to explain what HHD was, and how it affected me being able to do certain activities. The typical responses would include such gems as "Oh, that sounds like psoriasis, I have that. You should try (insert their current regime)... I bet it would work for you" and "oh, so it's dermatitis?" and "well it doesn't seem to bother you much, not like my Nana's dermatitis, that's terrible". Everyone became an expert with advice for me.
So I gave up. Now I keep it to myself for the most part.
Do you share your condition with others?
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AnnieNewZealand
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I do and I don't. I have gotten some feedback like, "Oh yeah, I have poison ivy.....what a pain.....", which is nothing like HHD and it is temporary! So with the people that fall into that group I quit talking about it or trying to explain. But for those friends that seem to understand and have empathy I do mention what I am dealing with. But I guess I pick my spots, so to speak.
My close friends & family are in my circle of who knows but for the most part I don't tell people unless I have a function I was invited to go to but can't then I give a vague answer as to why I won't be making it. Most people have no clue & never will. Even some of my family doesn't quite get it. Sometimes it makes you feel like you are exaggerating what I am going they with this dreaded disease!
HHD is really hard to explain to people and most don't really 'get' it. You are right - "no clue and never will". I understand why you give vague answers. People look at me and can't see the breakouts so how do I explain why I can hardly go out of the house for several months? And that a lot of HHD is about preventing further breakouts.........
I don't really tell people about my HHD. I get it mainly in a very private area so it's off limits. In any case they would never understand the severity and the pain. My husband is brilliant and so supportive but as for anyone else, forget it.
I totally get it. Thank goodness for a brilliant and supportive husband! Not everyone has that, as I am sure you know. I usually get my outbreaks in more conspicuous places, like my neck and even on my face occasionally, so I am able to mention it to people (not that people want to know about it).
When you tell people ...even a docotor that you have HHD they just look at you and you just know they have no clue what it is(I have met many doctors which had never heard of it) Also you dont want to share with the world that you have a blistering disease...most people dont understand.I have 2 friends which have shown compassion.So glad there are self help groups
I have also met MANY doctors that have never heard of HHD. When I found my new doctor and he actually knew about the disease I was SHOCKED and THRILLED! It was like I hit the jack pot just because I found an actual HHD knowledgable Doctor. Most of the time when people ask me what's wrong I say I have HHD but when they look at me with that look on their face that says "I have no clue what your saying" I say I have a very rare genetic skin disease that causes my skin to blister much like how new shoes make your feet blister when your breaking them in. With the major difference that the blisters I have appears all over my body, weep, itch, burn, causing severe pain and majorly wreaks havoc on my body. I've had it for 25 years and it was kindly passed down to me by my father. My Aunt also has it. I moved to Canada from the warm climate of North Carolina 20 years ago and the more milder temperatures here does help, but HHD sucks regardless of your surroundings. Thinking of all of you my fellow HHD Warriors!
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