The Letter.

Our visit with our second rheumatologist didn't go so well yesterday, to put it mildly. The doctor had a very arrogant and self-important personality, something I don't think has a place in the medical profession, but it's alive and well in a few so I need to just deal with it.

Bryan said since he knows I need therapy over this experience, he is fine with me talking about it, as long as he doesn't have to talk about it or his health to anyone (even me) ever again, so that is our agreement.

So, I spent the five hours following our appointment or yelling match as I like to call it, writing the doctor a letter. It started out angry, but that wasn't what I wanted it to be. If I had met this man prior to being sued, I probably would have mailed the angry letter. But I realized, in all reality, he probably won't even finish reading it no matter what I write, and it really doesn't matter. What does matter is that I make the effort to forgive him, and to act in a somewhat Christlike manner. So this is what I ended up with. It is on it's way to the post office as we speak, so hopefully, I am doing the right thing.

Dear Dr. So&So:

I need to apologize for how our visit with you went today. I regret that your opinion of us will always be that we are people who are close-minded and defensive. We are not typically the kind of individuals who allow others to affect us so much, or to react and get emotional like we both did. I could and should have handled things much
better. No one deserves to be attacked, and for that I am sorry. You were recommended highly to us, and I am sure you have done a lot of good for a lot of people.

I was told by the lady that helped me make our appointment back in November that the faxes of our file our PCP sent would be all your office would want. That file should have contained any and all test results my husband had over the past three years including blood work, x-rays, CT reports, MRI reports, etc. I was under the impression you would have reviewed that file prior to our visit. In hindsight, I perhaps should have brought copies of that file myself. I am obviously no doctor,
and do not know the best way to help my husband, so I do the best that I can. It was obvious from the tone of your resident when she gave us her opinion, and then later from your body language when you walked in the room, that even though neither of you had, based upon her comments, personally reviewed his file or any of the previous doctors’ opinions, you were both convinced of his diagnosis, and were more or less done looking. We knew we couldn’t force you to look at it any other way, which is why after speaking with the resident, we were getting up to leave when you both walked in. A better course of action for us would have been to just let that be the end of it rather than engaging in what ended up being an unpleasant experience for all of us. A waste of a co-pay, but it would have spared us all some discomfort.

We realize that from the short form we filled out, and the 20 minute exam he underwent, there are things that seem obvious to you and your resident, and that is fine. I think those methods would help 99% of people that walk through your door. You may even be right about my husband, and that is fine. We would love to make some kind of progress in his diagnosis. We have been and are willing to check out all possibilities and avenues. I have started the process in ordering the sleep study with our PCP. My biggest question was, and is, however, why you think something
that is so basic, so simple would have been overlooked by so, so, so many others who are equally as talented as you in their respective disciplines, especially by those those primary emphasis is sleep disorders? That question was never answered for me. I suppose it is possible they all just missed it, and that you were inspired to figure it out so quickly, but I hope you can understand why that feels so unlikely. We may not have explained adequately due to our emotions getting the better of us, but on two different occasions my husband was prescribed different medications to help him sleep better…one was trazadone I believe, and I cannot remember the other. My
husband was not able to function while he was on them, and it did not seem to improve his pain at all, so after a while, those doctors each recommended he go off of those medications, and did not pursue sleep disorders or apnea as being the problem any further. There is no question he suffers many symptoms dealing with his lack of sleep, perhaps we can at least get those under control. He may also have fibromyalgia, and we know this. But your lightening-quick assessments reaffirmed what we have found over the past three years, and that is that doctors call any mysterious pain that cannot be pinned down by test or scan as fibromyalgia. That may be an unfair assessment, but nonetheless, that has been our experience.

We changed insurance companies solely for the purpose of coming to the U for a
fresh look at his situation. We waited for months to get an appointment in rheumatology to rule some things out, including multiple sclerosis and muscular
dystrophy based on the wishes of our primary care doctor. We were told that because it’s a teaching hospital, doctors are energized by the unknown and look at it as a challenge, rather than an assault to their intelligence or character. I was very hopeful.

So when you so quickly dismissed everything we were saying before personally reviewing my husband’s file, and then basically telling him a big part of his problem was he wasn’t getting enough sleep or exercise…it was very difficult. Again, you may be right. But I would ask that you look at this from my husband’s point of view. At this point, my husband has made his peace with death (even though, according to every test he has had, he’s as healthy as a horse). Dying would actually be welcome reprieve from all of this for him. What you told him today was worse than any death sentence. What he heard from your conversation was that nothing is broken, nothing is degenerating…nothing is really wrong. I realize those were not your exact words, but when you are in pain, constant pain, one tends to read between the lines.

He has heard that over and over and over and over. I don’t know if you can imagine how that would feel or not, but it is a literal hell. At this point, as awful and life-altering as it would be for me to lose him, I would almost pray he could die so he doesn’t have to suffer so much anymore. I’m not trying to be dramatic, but that is how bad it is. I know of no one that is in as much pain as he is that handles and hides it as well as he does, and still functions as well as he does. He has had a couple doctors question if fibromyalgia is even real (true story) when we have asked if that was a possibility. Which is why in his mind, it isn’t “real.” He now has zero validation for all of his suffering.

Most people my husband deals with on a daily basis have no idea he is in even in pain, how much he hurts, or how difficult it is for him to move most of the time…he hides it very well. During his flare-ups, he has to use a cane in the morning at home to get around from room to room, and needs help in and out of bed and chairs. At school when he is bad, he walks the halls leaning on a baseball bat to be discrete. He is not looking for attention, he is not a whiner. He only takes ibuprofen when he is in
extreme pain, and not on a regular basis because he doesn’t want to even appear
to be addicted to any kind of pain reliever, regardless of how harmless it is. Those are not things you could have known, or probably care to know, but they are true. We are at peace with the fact that he may never get better. I just want to improve his quality of life if that is possible. It took me nearly a year to convince him to try one more time and make one more appointment with you to figure out what is wrong. This experience has smothered any remaining faith he had in doctors being able to help him.

I was told by the young man who registered us for our appointment over the phone last week that you were one of the kindest, neatest men he had the pleasure to work with, and how lucky we were to get to work with you. I allowed my hopes to get up, and let my guard down. That was a major mistake on my part. It is not your fault my husband is ill, and it is not your fault he may have fibromyalgia or a sleep disorder, or even that you may not understand what is wrong. But your empathy and understanding would have gone a very long way.

I appreciate your opinion, and your expertise. Hopefully they will lead us in a direction that will ultimately give my husband some kind of relief.


Tiffany H. Skelton