As mentioned before, I am Active Duty Air Force. At my last base, my coworkers were pretty understanding. It took awhile, but eventually they all started to understand my condition and though my pride hates to admit it, the leeway those of us who still work full time need. At my new base however, I'm pretty sure my coworkers think I'm making it all up to get out of work/ not have to do heavy lifting/ extreme exercise, etc. I've showed them fact sheets etc, on Chiari to try to help them understand, but in all honestly, I don't think they really give a darn either. Being stubborn, my personality tells me not to give a crap about them either or the fact that they don't care because they are not worth my effort. However, I spend more time with them than I do my own family and well, work is where most of my pain starts/ takes place. What do I do to make them care/ understand? It's beginning to interfere with my career and I feel at a loss with what to do/say to remedy the situation. Any advise would be wonderful. Thank you.
Annie,
It's so hard to explain to people because we look "fine" Your post made me think of a few things I have read. The first one is a book called "Contents Under Pressure" It's the first book written by someone that has Chiari and it literally changed my life and how I thought about Chiari and talking to doctors ect.. It was inspiring.
The second thing is a blog called Chiari Life. It's a great blog and Bearly has a "Letter to Normals" that is great. She also has a link to "Spoonies" that also tries to explain what anyone with a chronic condition goes through. I explain Chiari like its a cork in the top of my spine and my brain is resting on the base of my skull which causes pain and damage to happen. CSF is suppose to protect your brain by cushening it as it continueally washes over it. Ours is stuck.
It's so funny I have been dealing with this for 16 years and I have always been the first person that anyone including doctors have met with it. The funny thing is after I tell people after awhile many come back to me and tell me that a friend or cousin or coworker has it too. So more people are becoming aware of it. We just need to try and explain it the best we can and what people do is up to them. Hopefully the more they get to know you the more understanding they will be. Who would want to make this up? If we could all of us would gladly not have it and go back to "normal" I hope some of this helps.
Wendy
I think the more they get to know you as a person the more they will come around. I'm sure if you're stubborn like me, you'll try to do something that will cause pain. They'll see it and it will finally click for them. You've given them the facts. That's the main thing that you can do. It took people that love me time to get used to everything... some co-workers are still adjusting to the new way that I need to do things. I'm sure they will come around, it just takes time. I'm sure it feels like forever. I know it does with me.
Did you disclose your medical condition? If so and the military continues to employ you then they should allow reasonable accommodations such as assigning you to light duty or other work you are qualified for. You shouldn't be in a situation where you jeopardize your health or ever have to explain to your co-workers or supervisor. How stressful ! My coworkers know nothing of my condition, although I've disclosed confidentially to our Affirmative Programs officer to protect my rights as an employee. I'm not in the military tho, so maybe other rules apply in your case.
They do know and I am on certain restrictions. Its the fact that some days (very few) are bad enough that no amount of medication I own is going to make working bearable. Unfortunately there are just some days that the only way to make my pain bearable is load up on muscle relaxers and pain meds and sleep for a few hours with ice packs on in a pitch black room with no noise, not quite a work environment. I dont ever even ask for time off until my pain had lead to vomiting, in which case I can’t hold down any medication usually anyway. In addition to that though, I had a few episodes of vertigo last month (my first experience ever) which brought on anxiety attacks too because I didn’t know what was happening. So I can see where their frustration would come from, I just wish they would sympathize with the fact that I can’t control it. Thankfully I finally go to a specialist on the 17th. At this point, I am sick and tired of being medicated all the time and would love for them to tell me I can get the surgery. Unfortunately I believe a scheduled surgery date is also what it will take for them to take me seriously … So for now I’m just praying all goes well with the Neurosurgeon and my prayers will finally be answered. Thank you all for your kind words and advise.
Also, @Brandy and Wendy, I don’t have a very good personal relationship with either of them, so I’m not sure they will ever care enough! Our personalities just clash and they aren’t very kind to me as is!
Annie,
As a Marine Corps vet who was fortunate enough not to have my symptoms while working all of the time, they usually hit me during our field exercises. I was with a jump unit (ANGLICO) and it was usually vertigo or dizzyness that hit me. we would laugh and chalk it up to my fear of heights. Again at this time I was undiagnosed and hindsight is 20/20. If your chain of command is aware which I think you said they are only time will get them around. I know about the personality clash, I had it, during my 8 years with SNCo's , fellow NCO's and junior enlisted. Time did my groups around, hopefully it will get yours around.
also thank you for your service and dedication to our country, safety, and our freedoms.
Mike