Friday, June 13, 2014

Wise Readers: How You Cope With Patient Burnout?

Thanks to the fabulous and wonderful blogger Julia from Reasonably Well for writing about last week's piece on "Patient Burnout" and asking readers for how they cope with not just having a chronic illness, but the reality of being a chronic patient.

She got some great responses ranging from the importance of humor and laughter, being kind to yourself, and making sure that your medical care doesn't become an experiment for your physicians.  That last one is an important reminder that being a patient means making decisions with your provider,  not just following his/her medical advice blindly.  We also can't forget as another reader, exemplified that venting can be a powerful force and letting our frustration out can sometimes help us move on to the next thing.

I've shared all the responses below since I personally found them extremely helpful and insightful.  Thanks to those who commented for their wisdom.

 Sue said...
I have found that having a sense of humour is very important. Life can beat you down at times but being able to laugh helps things tremendously.

 Heda said...
Hard to even think about this one. One day at a time I guess is one option. Definitely accepting the illness is vitally important. Keeping a sense of perspective. Guarding against the temptation to make things worse than they are. Finding time for friends and family. Being kind to yourself. Respecting yourself especially when it comes to being able to say no to things that you really might want to do but know you can't. Not letting specialists use you as an experiment for their latest hobby horse. No, absolutely no, unnecessary tests. Way too much emphasis on discounting possible obscure diseases when sjogren's is the most obvious cause of a symptom. Is that enough? And I thought I had nothing mush to say about this topic until I started. LOL.

 Kelly said...
Up until recently, I relied on the ostrich maneuver: head in the sand, ignore symptoms or treat with OTC/home remedies and lifestyle changes, stay away from doctors as much as possible and repeat the mantra, "not that sick, not that sick, not that sick..."

But now I am waiting for a promised referral to the nearest Sjogren's Clinic to get a final word on whether or not it's Sjorgren's and if so, do we begin treatment of some sort. If not, then what is it??? The magic words to get the ostrich's head out of the sand were, "Interstitial Cystitis."

Better lay in a supply of yarn as knitting in doctor's offices helps me tremendously. Even when I can't focus enough to read, I can knit and that feels productive. Instead of a wasted day, I have a new sock for me or cotton washcloth for my grandson's pile of face-cleaning cloths.

 Unknown said...
I started with temporal lobe epilepsy in 9th grade, and the onset of endometriosis before that. I had to deal with the epilepsy, obviously, but the endometriosis- I took remember the words my mother's gyno told her: when it hurts bad enough, you will return! (sounds like Arnold in a movie, hmm?) Well, seizures require ongoing maintenance, infertility and the pain from the endo is what finally forced me to get treatment.

Now, with psoriatic arthritis, breathing problems, bladder problems, heart problems, tingling problems, ibs problems from the as yet undiagnosed something else....

what is most frustrating to me is not always knowing which doctor to go see...the internist or the rheumatologist; the dermatologist or the rheumatologist...etc.

Also, the person (people) who I feel is (are) my biggest supporter (my aunt, and my mother), are constantly coming up with off the wall wacky suggestions or bringing up the worst case scenario of someone they knew who had the same disease, implying that my psorisis (which is mild) is going to land me in the hospital also, instead of just being supportive. Or, that my one foot that the swelling refuses to go down in, is going to be like her friends (who has a bone fragment that now requires an ankle replacement). It's not the same thing!! I keep wanting to shout.

aaah. thank you! for letting me say that. That's my patient burnout, just the frustration of not always knowing who to turn to for help. I often go to my primary care, simply because I'm not sure who to see.

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