This letter is on behalf of the thousands of patients that have come to you in the slightest hope that you can give them a small piece of normalcy again.
We came to you in tears, in pain and in disappointment. Our bodies have let us down. They've taken us hostage in our own skin. Our bodies have waged war against our every fibers. So yes, we came to you in tears that we could not control. We reached out our hand to you in hopes you would take it and lead us to a more peaceful place. No, we didn't expect miracles. And we didn't expect to be cured. But we wanted answers and something as simple as a plan.
We heard good things about you, we held our breath as we decided to take another leap of faith and schedule yet another appointment with yet another specialist.
But what you may have misunderstood about ME (us) is that I actually have things I would rather be doing. I would rather be spending time at home bonding with my children, rather than sitting in a cold sterile waiting room with the news playing in the background. Even snuggling at home with my dogs while reading a good book is on my *would rather do list* - then sit here waiting for you. As I wait for you my nerves take over. Your reviews are great. You have a few who say you were less than understanding and you barely gave them the time of day, but I chalk that up to that being the person who can never be pleased. It won't be like that for me. I'm an intelligent bright patient and kind person. I've come prepared and I've done my homework. Certainly the you will appreciate that and will be moved to help. You will see me as the person that I am - a mother - a wife - a friend to someone- someone's daughter - you will see me as a *person* this time. Not as another medical chart, another icd-9 code, or a potentially psychotic woman who has too much time on her hands, spends way to much time googling and needs to be treated with antipsychotics and sent for a psychiatric evaluation. (Because clearly I love coming up with new ways to feel worse- spend less time with my family- and let my husband down yet another night. ------- That was sarcasm incase you weren't sure)
No, this time will be different. I will tell you my endless amount of struggles and symptoms for the last however many years, and you will be quick to give me a diagnosis. I will take a deep sigh of relief and brace myself for the next stage of
my life: slow but hopefully steady RECOVERY....
Oooops sorry!! That is how my fantasy always goes. Now back to reality........
Reality becomes the bitter sting I am quite use to. Reality is quick to remind me that doctors have become jaded in the world we live in. Overworked, utterly exhausted, the corporations that pay them have unrealistic expectations of how many patients the doctor can see in a day, and patients that were once people have now become figures of sales and dollar signs as pharmaceutical reps come and go with their pitch and take of the doctor's time that an ailing patient actually needs.
The doctor has learned to rely only on what is seen on those mysterious papers set before him. Nothing in your blood work, then you must be fine. "I don't see any of the issues you are telling me. You look healthy. You're staying busy." Why are you wasting my time? - I often wonder if the doctor in his or her checked out stage is actually thinking that about me, because all too many times have I been left to feel that way. Leaving the doctor's office trying desperately to hold back tears because Lord FORBID you give them another reason to say it is all in your head. Because the pain I feel, the ache, the stabbing, the burning, the extreme exhaustion that is crippling my life is NOT in my head. It's not something I can "positively talk myself out of" - but thanks for the suggestion. What you can't see because I look fine to you is how hard I am trying to feel normal. I wear makeup because I feel like a garbage can on the inside. I smile and am cheery to you not because I don't hurt or am not exhausted and dying for help, but because I am hopeful and holding onto the last bit of normalcy that I have left. And one more thing..... I am also strong. I have struggled for endless years chronically fighting something. So the pain that 7 years ago I would have rated as a 10 is now only a 4. So if I seem to be downplaying how I feel, it is because I have become use to feeling sickly. I'm so use to feeling sick that I no longer recognize the feeling of "coming down" with something. Because I always feel like I am coming down with something, weak, exhausted and riddled with pain. Always.
However, I am grateful and fortunate beyond words that after 7 years of being given the wrong diagnosis, having muscle relaxers thrown at me & calling that treatment, I finally found a doctor that believes me when I say I feel bad. He doesn't want to see the pictures I've taken to prove the things I go through. He says what I say is enough. He wants me better. He wants to help. He is treating me with auto-immune disease modifying drugs and when necessary --- gasp--- even steroids. Steroids when I'm not even showing inflammation in my blood work. Why? Because inflammation doesn't always show up in the test results. And just because it doesn't show up-- doesn't mean it doesn't exist.
Just like the wind. We feel it, we hear it - but we cannot see it. We just feel the pain that cannot always be seen.
So to the doctor out there that saw me and the thousands of others, the doctor who made up their mind about me because I appeared to be "just fine", or maybe just more work than you would like, please read this with an open mind, as a kindly reminder that we the patient are not just numbers, insurance issues, or someone else's problem. We are human. Real and ready to be helped.