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How to Prepare for a Doctor’s Appointment When You’re Chronically Ill

Ah yes, I remember the days when a doctor’s appointment didn’t require preparation. I woke up in the morning feeling sick, called the doctor, and was in his office several hours later explaining my very straightforward, uncomplicated symptoms that pointed in an obvious direction. Antibiotics, rest, and fluids were prescribed, and I went home, assured that I would be better within the week.

 

Those were the good ol’ days.

 

Things are not so simple when you have an undiagnosed chronic illness. Feel sick and call the doctor? He can see you next month…if you’re lucky. I’m still two months out from an appointment I scheduled in December.

 

When the day of your appointment finally arrives, you’re a bundle of nerves. You’ve built this day up so much in your mind, and you’ve put so much hope into this appointment that you’re not sure you will be able to handle another “everything looks normal,” though in the back of your mind, you know it’s a very real possibility. You try to describe your vague, inconsistent symptoms to the doctor. Did you remember it all? It feels like you’re forgetting something. Does he believe me? Do I look sick enough?

 

It’s easy to get overwhelmed. I can’t tell you how many times I’ve walked out of an appointment and remembered something that I should’ve told the doctor during the car ride home. It is such a frustrating feeling, especially when you leave without answers. What if that one symptom was the missing piece that could have resulted in a diagnosis?!

 

That’s why I’m stepping up my game for my appointment tomorrow. I’ve got a new patient appointment with a rheumatologist who was highly recommended by my previous doctor. I want to be as thorough as possible. I want to be taken seriously. And I want to get some answers!

 

Here’s what my new and improved appointment preparation looks like:

Paperwork—I’m hoping this is a no-brainer. I’m obviously filling out all my new patient paperwork beforehand, which gives me ample time to answer questions accurately. I can even call my parents to ask about family medical histories if needed.

 

Symptom Logs—I keep a wellness (or lack thereof) journal, where I document what I eat/drink in a day, symptoms I experience, how much sleep I got the night before, medications and supplements taken, bowel movements, activities, and any other information I think could be relevant to a doctor. It is a little time-consuming, but when you spend most days sitting on the couch, time is one thing you have plenty of! The simple act of acknowledging my symptoms, food intake, etc. helps me to be more in-tune with my body and able to answer doctor’s questions confidently. Looking back through my logs, I am able to see trends in my health and cause-and-effect relationships between certain foods/medications and my symptoms. It is a useful tool to show doctors that 1) you are serious about your health and 2) the timing of certain symptoms, especially the fluctuating ones. Plus, it’s an exercise in awareness, and you can never be too aware of your own body.

 

Symptoms Sheet—This is a new one for me. Generally, I’ve taken a list of my most prominent symptoms to the doctor and then tried my best to remember on the spot what were, in my mind, the less troublesome ones, hoping that the physician would just know the right questions to ask. I didn’t want to be “that patient” that thinks everything is a symptom, who takes up too much time with lengthy descriptions of how she felt, or who was probably just being a hypochondriac.

 

But let me tell you a story from my last doctor’s appointment.

 

Several days prior to my appointment, my nail split. Not like a hang nail…I mean a horizontal crack going straight across my nail. Normally I just wrap a Band-Aid around it until it grows out enough for me to file down. The day of this appointment, I’d run out of Band-Aids, so I wrapped my thumb in a strip of neon yellow sport tape. It was way conspicuous. It immediately caught the eye of my physician, whose first words to me that day were “What happened to your thumb?” I explained what happened, and he asked to see the damaged nail. After examining it for a minute, he looked up at me and asked if I would have brought it up to him if he hadn’t asked. I sheepishly admitted that I would not have, sensing that this was not the right answer. He explained to me that the condition of your nails can be an indicator of underlying health issues. He told me that based on the crack, plus all the other ridges, bumps, and lines in my nails, he suspected a vitamin deficiency or something autoimmune. He wagged his finger at me (jokingly, of course), and told me I better be sure to mention this to the rheumatologist he was referring me to. And, he obviously ordered tests to check for certain vitamins/minerals, all of which came back normal, of course. * Insert eye roll *

 

My nails have been this way for years, and truthfully, I’d never given it much thought, apart from the annoyance I experience every time I try to paint my nails, because polish won’t go on evenly. After all, it’s not painful. It’s not debilitating. It’s barely an inconvenience. Why would I bother a doctor and take up even a precious minute of my appointment time with something so trivial when I had so many other seemingly more notable grievances?

 

Here’s why: I’m not a doctor. It’s not my job to decide which of my symptoms are important and which are not. By omitting details that I’ve deemed unimportant, I may be hindering the diagnostic process. I might be adding months or years to the time I spend waiting for a name to put to my condition. So then, the choice is mine. Would I rather be “that patient” or would I rather suffer needlessly without a diagnosis or treatment plan?

 

I feel like the answer is obvious.

 

Returning to my symptom sheet…You better believe I listed my bumpy, flaky nails. I also listed the fact that my jaw clicks when I open it, my intermittent clavicle pain, and many other symptoms that I previously had deemed unworthy of a doctor’s attention.

 

I’ve been working on this list for over a week now, adding to it daily. Preparation ahead of time is key when you have a chronic illness. Many spoonies, myself included, suffer from something called “brain fog”, which to me feels a little like my brain is trying to swim through a pool filled with pudding…just a little slower than it should be. I occasionally have trouble word-finding or finishing sentences. Simply having a conversation in the midst of brain fog is a frustrating endeavor, so I’d rather not be caught unprepared on an appointment day with a pudding-brain.

 

Is it a lot of information? You bet. Do I feel bad about it? Nope. These fine people went to medical school, and I am confident in their reading skills. It’s two pages. They’ll be fine. To break it up a little though, I divided symptoms by body system or area affected and highlighted the ones I wanted them to take special note of.

 

Physical Appearance—This one is actually ridiculous, but I guess it needs to be said. Society says that if we want to be taken seriously in life, we need to look put-together, presentable, and clean. But do you know what you get if you walk into a doctor’s office looking polished and put-together and all your blood work looks normal?

 

Laughed at. You get laughed at.

 

Or you get told that you’re depressed or that it’s in your head. You get prescribed antidepressants, and you get referred to a therapist. It’s happened to me twice now. And I know that I’m not alone in this. Stories like mine are all too common in the chronic illness community.

 

I am fully aware that when I put on makeup, do my hair, and wear clothes that aren’t sweatpants, I don’t look sick. In fact, I look pretty darn good when I try. And that’s apparently an issue for many physicians. So tomorrow, I’m trying something new. I’m letting it all hang out, so to speak. I’m not hiding my puffy eyes behind thick eyeliner. I’m not covering the purple bags under my eyes. I’m not fixing my hair or dressing well or doing anything else that might make the doctor think that perhaps I’m not as sick as I say I am.

 

These are lessons learned the hard way. I know the post was a bit lengthy, but I’m hoping that it will perhaps empower someone at the beginning of their own quest for a diagnosis. I hope it saves them a little bit of time and heartache. And I hope that I was able to shed a little bit of light on the process for those who are well and don’t fully understand all of the hard work that goes into being this sick.

 

How do you prepare for doctor’s appointments? Any tips I missed? Let me know!

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2 thoughts on “How to Prepare for a Doctor’s Appointment When You’re Chronically Ill

  1. Do your doctors know about your dad’s Early-Onset Parkinson’s Disease? It wasn’t easy getting that diagnosis. He went through several years of incorrect diagnoses before a doctor identified it. Just wondering.
    I love this post! You write so thoroughly and eloquently!

    1. Why thank you! I do list his early-onset PD in the family medical history portion of all my new patient paperwork. My doctors generally ask about it briefly, but don’t seem overly interested. I’ll be sure to bring it up to the rheumatologist tomorrow!

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