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Spoonies are like snowflakes, each has a different story to tell

me wheelchair disneyland

Recently a fellow spoonie posed a question online.  She asked if she should share the details of her struggle because some people have rudely questioned her disability.  They say that she is just fishing for attention.  Anyone who suffers from chronic conditions like Fibromyalgia, Psoriatic Arthritis, Lupus, Lymes, MS, Endometriosis, etc… knows that the struggle is real.  We also know that most blogs don’t express the whole truth, including mine.  I am not suggesting that we are saying we are sick when we are not, because that is not the case.  While I do share quite a bit about my struggle, many times I omit the really ugly aspects of my conditions.  I don’t necessarily do it purposefully; it’s just that sometimes I don’t want to be reminded of how bad it can be.

Living with painful chronic conditions is exhausting, both physically and emotionally.  A day doesn’t go by without us experiencing some sort of pain or complication.  We are never without pain.  We have learned to accept some of this pain as a normal part of our lives.  Over time these everyday pains get pushed aside in our brains as we are too busy focusing on a new pain or a new symptom.  If a blogger omits these everyday pains from their posts, it doesn’t mean they don’t have them.

Another reason some of us may seem like we aren’t sharing many details is that thinking about those moments are almost as bad as living them.  Think about a moment in your life that left you feeling physically and emotionally broken.  Did your heart sink?  Mine does every time.

In the case above, she is being accused of sharing too much.  Can one really share too much?  I don’t think so and here is why.   I applaud those that are comfortable sharing all the dirty details.  When someone is first diagnosed with a chronic condition, doctors don’t always adequately explain what the patient could or should expect to experience.  Someone who shares the gruesome reality provides a look into the future for a newly diagnosed person, they can also make someone thank their lucky stars that they aren’t at that level yet.

How much or how little a spoonie shares is up to them.  There will always be doubters, online and in person.  In fact just yesterday a man stated that my conditions must not be severe because I had left the house!  This was an appointment, not a fun outing, not something I wanted to do.  No, it was something I had to do.  So I pushed through my pain, even though my body was begging to stay in bed, got dressed and left the house.  Those who do not live with constant physical pain have no idea what it is like and to be honest, I doubt they ever will.  My pain level and state of mind dictates my response.  I was not up for explaining every detail to this person yesterday.  Instead I took a deep breath, said “it’s bad, really bad”, and walked away.  Some days I am emotionally strong enough to share my struggles and there are others when I just want to brush those thoughts under a carpet.  Even if it was a fun outing, I would still be in pain.  Sadly too many people use those moments to break us down by doubting our pain or belittling us by saying it must not be bad or we’d be home in bed.  Wouldn’t it be nice if they would say “It sure is awesome that you were able to get out today”?

My advice?  Share what you are comfortable sharing and ignore the doubters.  Everyone one of us that continues to share our stories are helping the newly diagnosed.  We are sharing what it is really like to live with our conditions.  Spoonies are like snowflakes, we are all different.  We are also special in our own ways.  Some only share the downside of their conditions while others try to show a glimmer of hope.  Neither one is wrong.  If all I had ever read about my conditions when I was first diagnosed was doom and gloom, I would have wondered if my life was worth living.  On the flipside, if all I read were look on the bright side posts, I wouldn’t have been prepared for what was to come.  Overall, spoonie bloggers, no matter what their emphasis, all balance each other out.

Wishing you a day filled with gentle hugs and many smiles!

The Disabled Diva

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