Chronic Illness and Fear: Pt. 1

The topic of “Chronic Illness and Fear” could go on indefinitely; it not only affects us when we are faced with definitive physical issues but it slithers its way into every crevice of our lives. Just the fact that our health care providers essentially hold our lives (and aspects of them like the functioning of organs) in their hands is terrifying, especially given the number of poorly educated doctors and those with obvious “God complexes.” Most of the diseases that cause the most devastation are those about which little is known and about which we are learning new information all the time; doctors who claim to “know it all,” ESPECIALLY non-specialists regarding very rare diseases / syndromes, are playing with lives. THAT is fear.

Today I went to see a “retinal specialist” who could get me in because my retina specialist is booked. I mentioned I saw my Behcet’s specialist last week; my right eye has been in horrific pain and not seeing well and I have had many episodes of bleeding in my eye – he wanted me to get in to see “any” eye doctor ASAP just to check to make sure this was not happening again. To make a very long story short, this doctor was very mean to me and completely dismissive not only of my symptoms but of the clinical data in front of him – my eye pressure in my right eye is very high (in my left eye it is almost “normal”) and he dismissed this as well as some finding he had the assistant put in the computer and then erase. I asked him to do the angiography because that has always been the ONLY way problems have been seen in my eyes; he said he would not do it because it wouldn’t change his treatment for me. I do not get any treatment from this “random” doctor anyway. So basically the blood vessels in my eye could be leaking and since there is nothing he would do about it, he wouldn’t do the test to see if it was or was not (his words, not mine). Little to say I was furious leaving and I am now terrified because of knowing there IS something the matter but I cannot get anyone to look at it NOW which is what needs to be done.

The fear that this self-absorbed moron holds my vision in his hands is a fear that cannot be conveyed unless you have lived through it or something like it. It is an all-encompassing fear – and the pain is enough on its own, already seeping into my dreams (I have been dreaming that I have had eye surgery and the recovery was extraordinarily painful and woke me up – meaning my eye pain is so bad at night it does wake me up). I am usually not an advocate of utilizing words like “should” and “shouldn’t” in general, but IT IS any and every doctor’s responsibility to make sure the patient is treated, period. I have a long history at this office of bleeds in my eye and around my optic nerves and as I told him, all he needed to do was to perform the required tests that I have had a million times before and send the reports to my specialist. He would not do that. And so now I do not know when I will be able to get in to see ANOTHER specialist either in Philadelphia or NYC (not short drives and NOT drives I can make myself) and I don’t know if my eye is even okay. I apologize if I am kind of all over the place with this one, but I really am just scared.

I know anyone else with severe chronic illness has probably faced this “obstacle” at least once with doctors; I really hope none of you are dealing with this kind of issue now. I do hope you are all having a happy and healthy day wherever you are in the world. I hope to be back soon and I hope to be back when my eye is in less agonizing pain and when I can see a little better….

❤ Always, Beth