My life has become a long lesson in acceptance and adaptation.
Today, I posted to Facebook, and kindly asked all of my friends, family and followers to please take a look at the hard work I have been putting in this past week on the WEGOHealth Health Activists Blog Challenge.
I said, “Visit my blog at http://Misdiagnoseme.wordpress.com/ and read a few of my posts – some are quite short so it won’t take up a lot of your time.”
I posted this in the early afternoon. So I get a SINGLE response from the 100+ people that are allegedly my friends and family? NO.
It isn’t as if they were not on Facebook – they were – I can see that they were – posting about all sorts of stuff.
Yea, it may be that I am sensitive – but it is a pretty freaking lonely existence, as anyone with a chronic issue can attest, I am sure. You make plans with people – then you have to cancel. This happens over and over. Soon, people stop making plans with you. Family questions over and over – “when will she be better?”
Acceptance is key. Very much so. The simple decision of mine to ACCEPT my DSPD led to one of the best weeks I had experienced in a very long time. Until someone told me I was “inconsiderate” for having a sleep-wake schedule that is socially unacceptable. The next day – I pried my ass out of bed 2 hours before I should have. Soon thereafter, I had a migraine. 3 days later – I STILL had the migraine. A connection between restorative sleep and migraines? Perhaps? Or, was it just the full moon?
A good friend of mine (who is NOT on Facebook, but if he was, I’ll bet HE would read my hard work) has a saying that always makes me cringe: “Accept. Adapt. Overcome.” Well, looks like I have two of the three worked out. I don’t yet know how to overcome being shunned.
I write to inform people what it is like being a “complex” patient – having many concrete but uncommon issues – none of which are mainstream or easily diagnosable. I also write to TRY and get the attention of the medical community – to make them aware that they are hurting real people when they just give up trying to help a patient.
I have learned to help myself by doing a simple Google search. If I can find out what my diagnoses MIGHT be by doing a web search – why can’t a doctor do that – why shouldn’t they do that. After all, we pay doctors because they are supposed to be skilled at diagnosing what is wrong with us. (Paging Dr. House…) Why is it, then, that I have had to basically diagnose myself – do all the research- print out the journal articles – bring them into the doctor – then PAY THEM to have them say, “gee, maybe you are right.”
If people read my blog, you may finally understand why I no longer an able to work full-time, why I don’t seem to have a “normal” schedule, or why it is that quite often, I cannot make concrete social plans.
And, they may understand why the subtle comments, like saying I “sit around all day” or “gee, I wish I could do nothing like you do,” really hurt.
If I could, I would still be working 50+ hours a week, AND working as a personal trainer in weightlifting, and rock-climbing, and entering my art and photography in shows every weekend. And cooking dinner every night, and doing the laundry, and cleaning the birds’ cages every 2 days, and making little presents for all of my friends’ birthdays and such.
When you have medical stuff going on, as I do, you question the value of your existence on a daily – if not hourly – basis. When no one responds to a simple request, like the one I made today (gee, it is not as if I am not asking you to play Farmville or Mafia Wars or play Words With Friends!!!!), it feels like getting voted off “Dancing With the Stars” or “American Idol” because no one called in to “save” me.