Friday, May 16, 2014

Nothing is wrong with you because I don't see it!

May is Ehlers Danlos Syndrome Awareness month. Normally I post and try to raise awareness but the month has gotten away from me.

I have several posts that talk about my EDS,  you can read about them here.  It is important to remember that EDS is a different for every person that has it, but there are many common characteristics, like chronic pain, subluxations, dislocations, and general body stability issues.

Today I choose to discuss the update from  IPC (International Paralymic Committee) to all Parasport including TRIATHLON on the para-triathlete' definition.   You can find the entire classification document here: Triathlon Para-triathlete Definitions  

They are trying to do a good thing by expanding the definition so the physically challenged category can be more inclusive.  However, they have specifically EXCLUDED Ehlers Danlos Syndrome or Hypermobility as a reason to be included as a PC athlete.
---"Findings such as minor soft tissue contracture, joint instability such as joint dislocation, joint hypermobility, impaired muscle power from disuse, hypotonia e.g as associated with Down syndrome, Ehlers Danlos syndrome, oedema, disuse atrophy, organ dysfunction, fatigue as in myalgic encephalomyelitis (ME) or fibromyalgia or symptoms such as pain and/or numbness without other eligibility criteria listed above shall not beconsidered as a permanent physical disability. Such impairments are not considered in the types determined by the IPC."-

This angers me, people with EDS are constantly trying to 'prove' that something might be wrong.  It is common to have to argue with physicians and even family that your pain is real.  If someone is visibly injured or impaired, no one questions them, however 'invisible' illnesses are ignored.  EDS patients have a really hard time even getting proper pain medications.  They are often classified as pain-med seeking junkies.  It is a sad reality. 

I personally am managing, I have a great support team from my family to my coaches to my physicians.  But I am closely involved with many others with EDS and this is NOT the norm. 

Having Triathlon specially call us out is a slap in the face.  I would rather be ignored than a specific call out. It is saying "hey, yea YOU are not included (and I hear the undertone, you are making it up)"

I have been most positive about my EDS and becoming an Ironman.  I have no idea if it was 'easier' or 'harder' than the next person, I work with what I've got!

 I don't know what it's like to wake up pain free.  I don't know what it's like to have an injury that gets better with time.   I never know what my body will give me from day to day.  I've learned to just deal with it, because I don't know any different!

I would LOVE to go for a run and not have my arch collapse, but my reality is that it WILL, and I have to know how to deal with the pain and how to 'push on' if I can. I would love to go for a ride with cyclists and actually pace line, however, I cannot sit upright on a bike because my wrists and shoulders fall out of place.  I must ride outside of the line in my aerobars.  I would love to just run, or ride, or swim without thinking of EVERY body motion, every step, every single stoke.  It is natural for athletes to just 'get in a zone', however I have to concentrate on where my joints are with EVERY step, because they don't know where to be.

I have so many odd considerations in how I work out and race.  I carry a plethora of medical 'stuff' with me on every ride/race.  I'm sometimes laughed at because I bring the kitchen sink, but it is what I have to do.

I have wondered, am I physically challenged?   Even if I was able to compete in a PC category, I still wouldn't win anything.  The only thing it would do for me is cause questions "hey she looks fine, why is she in that category?" - (A very similar reaction that young people with EDS face if they have a Handicap parking sticker.  Check out this story).

I'm not saying "hey, pick me as a physically challenged athlete." - but they certainly shouldn't have called us out!  Everyone has a challenge of some sort so there really has to be a 'line', but why does it have to be here? and why do we have to be called out?

I know this is probably going to be a controversial post, and that is ok.  Some circles think that EDS isn't real, our pain is made up, or we're attention seeking babies.  Some circles think that hypermobility is a "benefit" - well, I tell you it is not.  When I watch gymnasts or contortionist, I cringe. I know what they're doing to the joints in the long run.  I would love to give my body to someone just for one day if they think any of these things.

We are living in the era of 'everyone is included' - TO A FAULT;   Such as kids all win trophies, whether they win or lose.   I am ok with not being INCLUDED as a PC athlete, but I have a problem with being specifically called out as excluded.

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  1. Hi, I'm seeing my orthopaedic in a few weeks. I've not been diagnosed, but, my mom calls me her rubber band girl and my hubby complains that I'm always getting hurt. My shoulders used to always fall out of joint while carrying heavy things. I have sharp pain in my feet at times and they don't feel right, I have trigger finger problems now. I've always had super flexible hands and toes and migraine too. IBS as well. ..

    I'm not sure how to approach this stuff with my orthopaedic. Do have any advice? Maybe I don't have EDS, but maybe I do have a mild form. I just don't know and it would be nice to know why I have the issues I do.

    Thanks so much!

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