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Commentary, Concussions

Lived Experience: Fibromyalgia Awareness Day & Concussions

We haven’t blogged much about concussions here yet. It’s not because we don’t care. In fact, it’s the exact opposite. We care about so deeply about this issue we haven’t wanted to write about it if we couldn’t do it justice. Part of the reason we are so invested in concussion prevention, diagnosis and treatment is because we (unfortunately) have a better understanding of what it’s like dealing with chronic, invisible disabilities than the average person. One of our writers for example, is dealing with post-concussion syndrome from a concussion sustained months ago.

I’ve never had a concussion, but do suffer from a debilitating chronic illness that has some similar symptoms, Fibromyalgia. For those of you who aren’t familiar with this syndrome, fibromyalgia (abbrev FM or Fibro) is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue, cognitive problems, and depression. (This is the abbreviated list, there are a few other, less common symptoms as well as a host of additional diseases and syndromes that are often co-morbid).

May 12th is Fibromyalgia Awareness day. I’ve posted more about this illness and my story here. If you have a moment, please check it out. Spread the word.

It’s difficult to find the words to describe what it’s like living with pain, fatigue, cognitive problems, etc. Even if you somehow find just the right turn of phrase, it’s still extremely difficult for the reader to fully comprehend. (I’m planning to write a lot more about this over the summer.) These are some quotes from NHL concussion related stories in the past year or so that I really identified with. Change a few words in each and this is me.

“I felt like absolute garbage for 4-5 days,” forward Ryan Johnson said. “When people ask me, ‘what does it feel like?’ I tell them it feels like 24 hours a day, seven days a week, you’re hung over. And it’s the worst hangover you’ve ever had. You feel lethargic, no energy, headaches, and you just want to sleep.”

“The worst thing you can do to a guy battling with a concussion is to run into him every day and be like, ‘How you feeling, how you feeling,’ ” Johnson said. “I tend not to ask about it and instead just say, ‘Hey, how’s your day going.’ That kind of thing.”
        ~“Recovering from concussion can be tricky” Jesse Rogers, ESPN Chicago, 3/25/2011

“I’m feeling better. I still have my days. The memory is the biggest thing for me and the mornings are kind of tough,” said Savard. “The memory stuff is really terrible and hopefully it gets better.”
        ~“Savard still battling concussion symptoms” Joe Haggerty of CSNNE, 6/19/2011

A few, certainly not all, of Crosby’s teammates are of the mind that he’s been symptom-free for a while, though they have no medical basis for that. Some think he should be playing.
        ~“Crosby deserves better” Dejan Kovacevic of Pittsburgh Review Tribune, 1/13/2012

Chris Pronger has gone through bouts of depression during his absence from the team which began in late November. He won’t play this season and his career could very likely be over.

“I see a lot of differences in Chris,” she said. “Just hoping to have a couple good days in a row and see him back to his normal self again. I know he wants this, too. It’s very frightening to him, too.”

She declined to get specific about what differences she has seen in Chris other than, to say, “He is not himself and it’s not in a good way.”
        ~“Pronger’s wife: Chris’ status ‘very disheartening'” Tim Panaccio of CSN Philly, 2/19/2012

For people like me, there’s a strange and sad silver lining to the NHL’s concussion problem. It “makes visible” the concept of invisible disabilities.

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About Karen M

Recovering academic/pop culture junkie/crazed hockey fan.

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