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To Disclose or Not to Disclose…that is the question that is bothering me

03/06/2013

I don’t know about you, but I come across specialists that will talk to you about your physical ailments and what is going on and their ideas for treatment when you first meet them, then the hammer drops…they look at your chart for what medications you are taking and all of a sudden you no longer have a problem, you are just crazy. Has this happened to you?

I have something wrong with my lungs that has been a mystery to a number of doctors. It is apparent on CT scans, so there is “proof” that something is wrong, that it isn’t all in my head. Yet, as they go through my list of meds or the boxes I have checked about depression, anxiety or psychiatric treatment, suddenly that weighs more than the diagnostic tests that are totally unrelated to my mental illnesses.

It is very hard for me to hold it together and not start crying when once again my symptoms are chalked up to “being all in my head”. I try to stay composed and state clearly that I am here because of the issue with my lungs. I am not here to debate whether I am able to differentiate between real and imagined ailments. I so wish it was all in my head, right now it would be easier to treat. At least I would have an answer, an answer that has deluded many pulmonologists. I get frustrated, I get angry, I begin to question myself, I stop going to try to find out what is wrong.

After seeing several doctors and being brushed off as crazy, I had a heart to heart talk with my primary care doctor. I could do this because she has been my doctor for 23 years. She has been there through thick and thin. She has watched me go from denial to acceptance. She was ecstatic for me the first time I was able to go in and say the words I am depressed again and we need to do something. Not “I don’t feel well”, “I have a sore throat”, or “sinus infection” and letting her say the words, her asking about my moods and what was really going on, knowing that in my own way I was asking for help. Now, I can’t hide much from her, she can look into my eyes or look at my body language and know if I am ok or not. We discussed what I was experiencing when I would go to another doctor and get brushed off once they found out I have Bipolar Disorder, anxiety, or PTSD. She asked me to stand tall and be a voice for those of us who have mental and physical illnesses. To help educate those doctors and spread the word that it is possible to have a physical as well as a mental illness. Was she kidding? Me, do that?

A decision was made. I would go see a new doctor that she had listened to at a seminar and she thought he could help me. I would not fully disclose my medications or mental illnesses at first. I would allow the doctor to evaluate me as if I had no mental illness at the first visit. I would hopefully get an unbiased evaluation. At the next visit I would give a complete list of medications when they reviewed my medication list. If asked why I didn’t list everything I would be honest and say that I wanted my diagnosis to be based on my physical symptoms, not tainted by the shadow of mental illness.

I have tried this, sometimes it does not change a thing in how I am treated. Not surprising, other times it is as if a switch had been flipped and now anything they already said or diagnosed was now incorrect. I never returned to those doctors, instead I went back to my primary care doctor for her to treat me or for us to find another specialist to try.

I now find myself once again in the quandary of whether to disclose or not to disclose. After the last doctor tried very hard for two years to find the cause of my problems, I myself began to question if it was in my head. I stopped going in for visits, determined to will it away. Unfortunately you cannot will away something that is real. Of course now I am once again sick enough to not have a choice but to seek the help of a specialist. I am going to Mayo Clinic this time to hopefully once and forever get to the bottom of this. The problem is, I sit here with the paperwork they have sent for me to fill out. Along with it is a whole brochure on how important it is for them to know every medication, every vitamin or supplement you are taking, that they want to make sure there is not a contraindication for taking a combination of them. Also to make sure when they prescribe something there is no adverse interaction.  With it so clearly laid out in front of me, I am afraid that if I am not upfront in the first place they will not continue to see me. I am equally afraid that if I am upfront that I will be dismissed with a slap on my wrist for bothering them with symptoms that I have conjured up in my mind.

Oh, what to do…

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