A Letter to Patients With Chronic Disease

A Letter to Patients With Chronic Disease

I'm really surprised I've never come across this post before! That first comment (below the post) made me well up, it's so true, just meeting a healthcare practitioner who WANTS to help elicits a feeling of undying gratitude in me, personally... Having a doctor who you can tell your complaints to whom you don't have to fear being given that dubious look by...just means so much just in itself!

The last few years, I've come to feel like a Professional Patient. I'd lost my insurance, moved, accquired MORE chronic conditions...and having had to mostly take what I could get, I came to know well the feeling of dread that comes with going to see a new doctor when you have an incurable illness and symptoms that keep piling up. It's funny, because this letter actually sort of describes what I already do... I go in, hoping for the best but expecting the worst. I steel myself for the sidelong glance, prepare myself to not get too defensive if I see the wheels turning in their heads towards the direction of questioning disbelief... Try to find the balance between patience and the firm resolve to get what I need while not inconveniencing them excessively... Give them the information they need to help me little by little, gauging their reaction to see if it's safe to proceed, or if they've had all they can handle, estimating the dominance of their ego so as not to threaten it and risk them shutting me down, if I should play dumb or hit them with everything I know and hope they will let me be a partner in my own care... It's like an intricate dance.

It can be very exhausting, at times heartbreaking, discouraging, and other times fill one with hope, gratitude and encouragement. (Which is why sometimes, I just need to go awhile without seeing a new doctor; you never know which you're going to get!) And it seems like I'm always seeing one...This year, with all the upheaval, it amazingly has only been one, my Endocrinologist, I believe. But last year brought a Neurologist, a Cardiologist, and a Gastroenterologist, and at the very end, a new PCP. (One of those lovely ones that listens, wants to help, is kind, and makes you so grateful!) I finally gained the trust of my Rheumatologist, who now prescribes the drugs I need without looking at me suspiciously, and my longer term docs, the couple I have, are of course still around because they are good at what they do, understand my disease, and give me hope.) So...yes, interesting to see things from a doctor's point of view and have the dance we do acknowledged...so perfectly! And also the fact that Emergency Medicine is SUCH a different specialty...Which I'd come to the conclusion of as well, after having a friend become and EMT and decide that I must be a drug addict or a crazy because if he saw me in his ER he would find nothing seriously wrong with me...which is ironic because he's the one who noticed my POTS-induced tachycardia one night which made me think it was safe to talk about with him. Wow. Big mistake! But anyways, I digress...My point was, I loved what the doc said about avoiding the ER, Good point! (Not that I haven't been tempted lately...Fun times!)  Again, good post!