New Doctors and Butterflies

I have an appointment with a new doctor tomorrow. With every new doctor I see, thoughts race through my mind – will this be the last doctor I have to see and explain my complicated medical history to? Will this one be able to sort things out and help me, even if it’s only in a small way? As that appointment gets closer, I have a fluttering in my stomach. You know the kind I mean – that combination of excitement and apprehension, like the way you feel before the first day of school or before setting off on a trip by yourself for the first time. It’s that slightly nauseous feeling that makes you want to throw up and do a happy dance at the same time.

It may seem weird to be “happy” about going to see a new doctor. I don’t think you can truly understand the complexity of this feeling unless you have experienced it for yourself. Unless you have walked a mile in the shoes of someone with a chronic illness (or, in my case, multiple chronic illnesses). Perhaps through my writings you’ve been able to step into my shoes for a moment, or at least better understand what it is I and so many others with chronic health conditions go through everyday. That’s what I hope at least.

So as I think now about the doctor’s appointment tomorrow with a new gastroenterologist, I begin making lists in my head (and on paper because, let’s face it, my memory isn’t anything to brag about and thoughts don’t seem to nest there for very long before finding their way out and taking off for The Bahamas). I need to print off directions to the hospital – Mass General, a new experience for me to be seeing a doctor whose office is actually IN a hospital (and in Boston, I generally avoid Boston doctors because of their bad reputation with Lyme disease). I need to make sure I have a list of all my current doctors and one of all my current medications. I need to make notes about my history of gastrointestinal problems with as much information as possible about my current situation (mainly to help me get my thoughts in order so I won’t be totally lost during the appointment). I need to copy some of my medical records so he’ll have as much pertinent information as possible. Yes, organization really is necessary or else I’m sure I’d show up for the appointment in a dense brain fog and not be able to coherently talk about anything.

My experience of seeing new doctors for the first time is mixed at best. Sometimes I’ve been looking forward to an appointment for so long that I’ve built up grand expectations that only lead to me leaving the office in tears. That has thankfully only happened on one occasion that is worth remembering (with a certain Lyme disease doctor who I won’t go into details about). But there have been some other visits with new doctors that have given me renewed hope that things WILL get better. Expectations are dangerous things, and they’re difficult to keep in check. Because even if you tell yourself over and over that you shouldn’t expect much so as not to be disappointed, you always have high hopes that can easily be popped like a balloon.

So today I’ll make lists, organize everything the best I can, and hope that I don’t forget anything. And of course I will hope and pray that this appointment goes well and that this doctor will be able to figure things out. One of my biggest fears is to never be given a diagnosis, to be blamed for what’s going on, to be scolded for not forcing myself to eat even when I’m so nauseous I just WISH I’d throw up so I could get some relief. I don’t believe any of this will happen tomorrow, but I also don’t expect to have a real diagnosis on the first visit. I will need testing. And the more tests I have that come up normal, the more tests I’ll have to go through. Is it too optimistic to think that the first test will bring a diagnosis? Am I being unrealistic? I’m used to tests, and especially to tests that only show that there’s nothing wrong.

If you’ve never had a chronic or serious illness, you might not be able to understand the wish that something will come up abnormal. But for those of us who are dealing with health struggles everyday and deal with doctors who only look at our test results (all normal) and then dismiss us as having a psychosomatic illness, having a test show an abnormality can be like getting that pony you’ve always been waiting for. This may seem like a weird analogy, but when you think about it, it makes some sense (or maybe it only makes sense to me). I'll explain.

A pony is something you’ve always wanted, but with the pony comes unwanted complications and responsibilities – you have to clean out the barn or stall, you have to spend time brushing its hair, you have to take care of it. So while an abnormal test leading to a concrete diagnosis may seem like a wonderful present at first because it’s proof you’re not crazy, with the diagnosis comes new challenges – taking medications, dealing with side effects from the medications, dealing with new medications to combat the side effects from the first medications, doctors visits, long drives to see specialists, insurance frustrations, and the financial burden of it all. But still, in my opinion at least, it’s much better to have a diagnosis and be able to do something about it rather than wandering around from doctor to doctor with none of them knowing what’s wrong and all the while having to deal with horrible symptoms from the undiagnosed condition.

So I pray that tomorrow will bring some answers, although I fear at first it will only lead to more questions and of course to those dreaded but much needed tests. I wish I could have a clean slate, go back to the beginning of my illnesses and make different choices based on all the knowledge I’ve gained over the past 8+ years. (Wow, more than 8 years of being sick. I wish there was a time limit on how long you were allowed to be sick for, since I fear the year count will continue increasing for a long time to come.) If I had known then what I know now, I don’t know if I’d still be sick now. But, as they say, hindsight is 20/20. Ironically, my CURRENT sight is better than 20/20, although only slightly. I wish that worked for seeing life clearly.

For today, I’ll try to forget about the need for tomorrow’s appointment to go well and just concentrate on getting organized. At least if I can have SOMETHING organized, I feel like I’m not completely drowning in the messiness of everything. Hopefully the flutters in my stomach will subside (ironic that I’m having nausea and butterflies in my stomach as a result of thinking about the appointment with the GI doctor) and my mind will be able to quiet down enough tonight so I’ll be able to get a good night’s sleep and be somewhat well rested in the morning. And if not, I guess it’s not a bad thing for a doctor to see me feeling really sick.

“It’s all right to have butterflies in your stomach.
Just get them to fly in formation.”
--Dr. Rob Gilbert