September Is Chiari Awareness Month
It’s hard having a chronic illness that isn’t all that understood.
As patients, we have to fight on absolutely every level!
Before diagnoses, we fight for someone to hear us when:
- We explain to them that our neck is to weak to hold up our head.
- We’re trying to hold our heads up with our hands when laying back isn’t an option.
- Our necks start spasming to the point that we feel like we’ve been internally decapitated.
- We have to ride in the front seat to try and minimize the car sickness.
- We suddenly can’t balance to walk.
- Our eyes start twitching beyond what could ever be considered normal.
- We aren’t able to do what we could just a short time ago, or even a few hours ago.
- That we want to scream and cry because of the pain, but we know it will only make it worse.
- We go to say something and can’t find the right word because it just isn’t in our memory bank at that moment.
- We spontaneously can’t read because we have double vision, blurred vision, or our eyes wont stop jerking around to focus, yet an hour later we’re fine.
- We explain that doctors not knowing what’s wrong doesn’t mean that nothing is wrong (even when they say nothing is wrong).
Around diagnoses, we fight to:
- Process the magnitude of what we’re facing.
- Learn all we can so we’re prepared for the important decisions before us.
- Find the right doctors who are knowledgeable and trained in our condition(s).
- Fight to be stoic when we know that it’s not just our bodies enduring all of this – something is breaking in our souls and we’re fighting to not let it change us for the worse.
When our doctors continue to dismiss our symptoms, we need our friends and families to understand:
- That we’re still the same wife/husband, mother/father, sister/brother, aunt/uncle, and/or friend that you’ve known and loved for all these years, and we need you now more than ever!
- That decompression is not a cure! In fact it typically fails to relieve symptoms over the long term nearly 50% of the time when pathological conditions aren’t treated beforehand.