Sunday, 27 May 2018

GUEST POST by Diana for EDS/HSD Awareness Month - 'Three little words'

Three little words

“I believe you.”

Powerful words to someone with an invisible illness. Ehlers-Danlos Syndrome (EDS) fits right in there.  You look fine one day, then the next – your ankle is in a brace, you have trouble walking because your back hurts, and maybe you even have a migraine that seems to come back when it's most inconvenient.

To be honest, EDS (we have hypermobility type) really is one big inconvenience. 

My 10 year old was diagnosed after 3 years of symptoms that kept coming back – chronic fatigue, joint problems, headaches/migraines, digestive tract issues that culminated in repeated bouts with mouth ulcers so deep they gave me the heebie jeebies, etc.  Not long after, years of her “normal” being pain from migraines, joint pains, sprains, strains (what she frequently described as “dislocations”), my 17 year old was diagnosed.  Only took her 7 years.  Me?  I was diagnosed after the kids – took 30+ years.

As a parent, my focus is on the kids and their ability to navigate life.  They have all the typical symptoms.  We were lucky ones.  Once they got referred to the pediatric rheumatology clinic at Cincinnati Children's Hospital and Medical Center on 2017 (Ohio, USA), there was never a doubt from the staff.  Not one.  They said, “I believe you.”  I cried from relief that we had an answer.  Three little words.

My husband is healthy as a horse.  He barely knows what a headache feels like.  Thankfully, he believes us, too.  “I believe you.”  Three little words.

This week, my 10 year old told me she heard a teacher say they were looking to see if she was really having trouble walking the other day.  It would have been better if she had simply heard, “I believe you.”  Three little words.  


Yesterday, my teen's school put together a medical plan for school accommodations.  It's been a hard road to get here.  Prior to yesterday, they sat on it.  They didn't say the words, but ignoring the request for the medical plan meant they didn't think it was real.  If only they had just said, “I believe you.”  Three little words.

The kids' doctors believe them.  Their behavioral therapists believe them.  But when you get the skepticism, you become quiet.  You don't tell people anything about your condition.  You pretend.  You become someone less authentic.  It isn't about complaining, either.  It's about knowing the people you care about in your life care enough to believe you.  “I believe you.”  Three little words.

Three little words can change the future of a person with chronic pain.  There is no need to understand the medical condition.  All that's needed is to believe. 

Three little words.

“I believe you.”

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