The Power of Words

MRKH Support and Awareness, the Facebook Support Group for the Beautiful You MRKH Foundation, Inc., received this series of messages yesterday on our Facebook support group. Reading the profound negative effect that word choice had on a community of women supposedly served by this mobile app reminded me that words have power. They have power to increase a person’s self-esteem and they have power to take it away. Calling a congenital medical condition a disease harms the very people that the greater medical community wants to help. If you are a physician, a nurse, a receptionist, a caretaker, a member of the insurance community or someone creating a mobile app to help people, please take the time to THINK about the meaning of your choice of words. Interestingly, on the online iTriage page, when I typed in MRKH, the tag line was condition. Had the people who designed the mobile app chosen to use the term condition, would the following conversation have taken place?

This upset me. I wanted to read what my health app would say about MRKH If it had anything about it and it came up as a disease. I lost it. It made me feel sick. makes me feel defective.

Response #1:

Hugs, while we are technically defective…as in we were born without all the right parts…it doesn’t define us as women. We just have to embrace our creative side and figure out what we’re going to do to compensate for missing a few parts. My BFF would tell you I certainly have a few screws loose, so missing parts is inevitable! You’re not alone in MRKH…I’m actually impressed your app knows about us, and think it’s pretty cool even if it does call it a “disease”.
April 9 at 7:32pm · Like · 8

Response #2

Definitely not a disease! I’m impressed that it came up in your health app though…my own doctor didn’t know what it was! Keep your head up:) you’re not defective or any other negative thought that may cross your mind. You’re unique:))) never forget that<3
April 9 at 7:45pm · Like · 12

Response #3

Infertility is considered a disease so maybe since mrkh is related to that. Idk that is difficult to see in writing though. 
April 9 at 9:26pm · Like · 1

Response #4  

A disease is any abnormal condition affecting normal functioning of an organism’s body, so technically yes, MRKH is a disease. That’s okay though, sure we have a few defects but that doesn’t make us any less, and it doesn’t have to define us. Hold your head high!
Yesterday at 12:33am · Like · 7

Response #5

Sending hugs
Yesterday at 1:23am · Like · 2

Response #6

I’m a mother to one of your MRKH sisters

First, let me say how wonderful it is that MRKH is recognized in an app! The word is getting out about it and that’s fantastic!!!

I’m glad your here to gain support from those experiencing the same feelings.

I too am concerned and upset with the way it is being described – disease or syndrome. Yes, when you dig enough it will describe almost any diagnosis as a disease. But when you add the education level of most of society, the word disease describes something that is attacking the body and/or organ.

I can tell you my daughter struggles with the word disease. Yes, we have went over the definition many times. To her the word disease means something that progresses and needs treatment. When she hears the word “disease” she envisions someone that has something like cancer or something she can catch. Clearly MRKH isn’t listed in those categories.

When she hears the word “syndrome” she understands it’s not something that has laid dormant in her system and now needs medical treatment. Most of society understands syndrome to be something that a person is born with, like Aspergers Syndrome. It isn’t something you can catch or transmit to another person.

I never like to compare any one ailment to another’s. Cancer, Aspergers Syndrome are completely different from each other as well as MRKH. They are all different and need to be defined as such.

I just feel that syndrome is an easier way of explaining the diagnosis than a disease. After all it’s in the title – Mayer Rokitansky Kuster Hauser SYNDROME 
Yesterday at 10:01am · Like · 10

Original Poster: that was the best explanation. Thank you so much for this. Thank you all of you. 
Yesterday at 10:08am · Like · 2

Response from response #6 Your welcome sweetie! I’m here to support you and your sisters and my daughter(s) any way I can! I hope I don’t offend or step on toes, because that’s never my intention 
Yesterday at 10:14am · Like · 3

Response #7 Thank you from me as well; Very well said; 
Yesterday at 10:18am · Like · 3

Response from Response #6 Your very welcome dear!! And thank you!! I am glad to know that my words and opinion help in some way!! I wish I could do more to help!! ))))Hugs((((
Yesterday at 10:22am · Like · 3

Response #8 Wtf