In one of my earliest posts about how to talk to your doctor and be your own advocate, I go over how to use technology to communicate with your medical team to get the results you need. There I strongly suggest making a medical powerpoint. This post outlines what a medical powerpoint looks like and how you should structure yours.
Why is this useful?
A medical powerpoint keeps you organized – and looking on-point to your doctors. Doctors are people, and people generally have to be won over to gain their respect. It’s easier to negotiate your health, or work with, a doctor who respects you. Communication is smoother.
Not to mention, if you’re feeling really sick, it can be hard to remember what to talk about, or even speak. Having a powerpoint on your smartphone or tablet doing the talking for you can remove large obstacles in communicating with your doctor.
Note: If the doctor refuses to see the powerpoint, read from the powerpoint and go into a monologue.
How to Make a Mobile Powerpoint
You can make a powerpoint on your computer and email yourself, therefore accessing it on your smartphone.
You can create a Keynote powerpoint on your iPhone and access the powerpoint on your smartphone.
You can create a powerpoint on your tablet using Keynote, Powerpoint, Amazon Docs, or another app.
You can email your powerpoint to your tablet from your computer.
Have the doctor’s specialty, date of the appointment, doctor’s name, and your name. This is to improve organization. Save the powerpoint as the doctor’s specialty and the date of the appointment.
Updates from your medical team
If you’ve been to any other appointments, had labs done, tests run (such as MRIs and CAT scans) even if they were duds, put them here. This will be an ongoing, ever-growing list of slides.
These are symptoms you’ve experienced in the past 2 weeks. Bold new symptoms you haven’t seen before.
This is your most important slide. Timing is crucial to a diagnosis as it reveals whether a pattern of events caused the illness and what, as well as duration of time. Try to keep this to 1-2 slides.
These are the overarching symptoms you have been experiencing chronically over time. If a symptom has lasted more than 3 months, put it here.
If you are experiencing pain, try to figure out where it is with deep breathing (if you don’t already know) and google a pain scale to gauge it.
Unfortunately, you do have to put down any illnesses you already have, because they may be causing your problem.
Helping Yourself – Demonstrating Strength
Doctors don’t like whiners, like anyone else, and it’s their job to be complained at. Even if you have a legitimate illness, it’s important to negotiate with the doctor that you’re not just sitting on the couch eating potato chips. You must show the doctor you are strong and worthy of respect. List things you do to take care of yourself, whether it’s a regular nail appointment or a walk in the park.
I know what I’m talking about
Basically copy and paste this. It shows the doctor you know what you want from them and therefore know what you’re talking about. This is more than what most patients can say, “I can articulate how I want to be treated.” You will earn respect points.
Have a list of your prescription and OTC medications, such as Tylenol, their dosage, and frequency.
Supplements do not fall under the same category as medications. These include vitamins and natural herbal supplements.
Questions for the doctor
Before you go to the doctor, brainstorm a list of questions to ask them.
Find some medical-related humor to put at the end of the slide. See if your doctor comments on it. Don’t ask.
You can win your doctor over and communicate effectively with just a little extra leg work. Don’t worry, you can do this!
Experiencing bodily discomfort can be scary, especially if it’s new. At first, you may have no clue what to do. You start out talking to family and friends. Eventually, you consider a doctor. The first visit is more confusing and angering than you expected. Aren’t doctors supposed to be like vending machines? You get the sniffles, you go in and out comes an antibiotic or nasal spray? Why is this so complicated?
That’s because the journey to a diagnosis is a long, hard one. If you’re reading this I can guess you’ve been on WebMD self-diagnosing yourself with everything from leprosy to cancer. You may have even come across fibromyalgia by this point, and you might want to ask your doctor to test you for that. Don’t do that. Fibromyalgia is a diagnosis of exclusion, to be explored in later blog posts, as this is a somewhat controversial statement depending on where you live. It’s basically what you end up with after about a year of tests for everything but fibromyalgia. But there is a way to streamline your diagnosis journey.
For example, I have a severe form of fibromyalgia. It developed over a series of 3 years. There is, honestly, no use in me railing against the medical neglect I received that led to the lack of catching it before it progressed so far. Who knows what might have happened if doctors had seen the tan, fit, blonde pretty twentysomething with a mental health record’s complaints as valid back in 2016? I may have ended up just as severe as I am now. What I do want to do is give you a short regimen for gathering data should you find yourself in a similar predicament.
Know what pain is.
I honestly didn’t know what pain felt like. As a small child, if I fell down and scraped my knee, my mother did not come over, pick me up, and kiss my booboos. Even when I developed endometriosis at age 14 I thought I was just sick to my stomach, light headed, and bleeding like crazy. I could describe what was going on poetically: “Something is clamping on me,” “this burns,” but I never thought of it as pain, because I was taught to ignore, belittle, and never admit pain from a young age. If you can describe what you feel in metaphors, think about people in movies or books experiencing similar situations and if they were described as being painful. If painful doesn’t work for you, think of “this hurts!” Answer “yes” when the doctor asks you if you are in pain if you can pass the metaphor, movie, or hurt test.
2. Keep a log of symptoms.
Buy a little pocket journal. When you get up every morning, write the date. Whenever you experience a symptom – nausea, vomiting, tingling, bowel movements – write the time and the symptom next to it under the date. Repeat. The point of the log is both for you to show the doctor and for you to learn patterns.
Track your exercise in your symptom journal. Do you feel dizzy or lightheaded? How long are you able to exercise? What type of exercise are you doing? Even if you’ve never exercised before in your life, do this anyway. It will give you a more accurate depiction of your endurance. You can even start off just walking at your local mall or around your neighborhood.
Log what you eat, when you eat, in your symptom journal. Your symptom journal should be written chronologically.
When you write your date in your journal, record what clothes you are wearing and when. Make sure you write down the fabric type of the clothing. This can be found on the tags inside your clothes. This can help you see if there is a pattern between what you’re wearing and whether that triggers a symptom. Numbers 2, 3, and 4 are good things to do post-diagnosis as well.
This 5 step list is great for any diagnosis journey, no matter what the diagnosis may be. Remember to be patient and kind to yourself, because most diagnoses take quite some time. It’s okay, many people have been there before, and get off of WebMD!
Yesterday I went to a neurologist at a research hospital about an hour and thirty minutes away from home. They specialized in Multiple Sclerosis, which I knew I didn’t have, but I was desperate to see this neurologist.
Back in July 2019, I woke up screaming and writhing in pain.
All I could do was lay in bed while my fiancé fed me by hand and covered me in
ice packs and microwaved towels. Eventually I was taken to an urgent care where
I was told I could have nerve damage and needed to see a neurologist and rheumatologist.
Thankfully, they told me I was not a liar and I was clearly in pain, but they
could not give me pain medication.
I waited five days to go to urgent care. This was because I
had been unemployed for eight months due to not being able to receive proper
medical care for my gastrointestinal problems which I had believed morphed into
widespread pain. What really happened was I was now aware of the pain. I had always
had very high pain tolerance. The truth was I had been in pain for years while
I was vomiting daily, but once the vomiting stopped for a minute, I felt the
ruins of my body cave in. So, this paragraph is to say, I was out of money and
begging for it from my family, who was 12 hours away, did not believe I could
be that sick at age 26, and after five days of phone calls and my fiancé also
pleading with my parents, I was allotted $100 dollars to go to an urgent care.
I spent all of it on one appointment.
Let’s talk about the years I spent not receiving proper
gastrointestinal care. At the time, I was a pretty, slender, blonde young woman
with a fake tan who dressed to the nines everywhere she went, including the
doctor. My health was not as bad as it was now, but things were still bad. I
always went to older male doctors. I am not saying all older male doctors are bad doctors for women,
as some female doctors can be prejudiced against their female patients. In
fact, most doctors are biased against women, especially women of color.
John Oliver does a great, sad, and humorous job of
explaining bias in medicine in his video. It’s sad because it’s true, and it’s
funny because of the delivery.
In the video, John Oliver suggests bringing a white man
along with you if you need help. This is actually true, as I have brought my fiancé
with me to some doctors appointment. However, he is a sweet little engineer,
and works very hard around the clock. This means I don’t often get my white man
to speak up for me. I’ve included a few tips on how to speak up for yourself.
Patient Advocacy: How to Talk to Your Doctor
Purchase a cheap tablet off of Amazon
No, I am not endorsed by Amazon to advertise for them. However
as someone with a chronic illness I find their evil empire useful, as I can use
Alexa (something I don’t have) or my smartphone (something I’m on all the time)
to order anything I need. Ease and convenience is key for a spoonie when we need
to hunker down and get some stuff done. Please note, you do not need an
iPad. I bought my Amazon Fire tablet for $40, and it’s a gem.
Use your cheap tablet to create PowerPoints
for each and every doctors appointment.
For each appointment, put the name of the doctor, their
specialty, and date. You can copy PowerPoints to create others. Include
complaints, symptoms, updates from all of your other doctors whether you
believe they are related to this doctor or not, questions, a medication and supplement
list, and thank-yous (if you have any). Important: create a slide full of
things you are doing to help yourself mentally, physically, and emotionally,
such as meditation, exercise, hobbies, and social activities.
Find a funny pain scale graphic to include in the PowerPoint
to refer to. Doctors like patients who have a sense of humor.
Create these for every specialist you have, from your talk therapist, psychiatrists, rheumatologist, neurologist, dermatologist, family doctor, gastroenterologist, and OBGYN. Anybody. It will help guide the conversation, fight brain fog, and ultimately make you appear intelligent, organized, and worthy of respect.
Once you have acquired the tablet and created
the PowerPoint, go the appointment and each time you are there hand the tablet
to the doctor.
If you say “I have made a PowerPoint I want you to look at,”
you doctor may be confused. Instead, say, “Please look at my tablet. I have
prepared a PowerPoint with medical information for you to look at to help our
communication and for you to better understand my case.”
Tell the doctor it is okay for them to hold the tablet, or you can set it on a flat surface to scroll through the PowerPoint with them. Tell them to ask you questions as they read.
2. Obtain and create a medical records binder. Take it to each appointment.
This is the hardest part. Some doctors will charge you through
the nose to get your own information. The best thing to do is at the end of
every appointment, to ask for a write-up of each appointment. Contact the labs
where you get your work done and get copies of your lab work. Put it in the
binder. Get hard copies of your radiology. To do this go directly to the imaging
centers. Gathering your records will take the longest amount of time and many
phone calls, but it is worth it. You never know when a doctor will doubt you on
the spot about a condition you have in the room and you will need your binder
of truth, your sword of justice, to whack some sense into them.
Please note that not all doctors charge money for records.
How My Tablet and
Medical PowerPoints Saved Me
On the Amazon Fire Tablet, Amazon has a Doc app native to
the tablet, where I make my PowerPoints. Note that I do not make them fancy.
Please do not make your medical PowerPoints fancy, it takes too much time.
I had a copy of a rheumatologist PowerPoint that I was
editing. It had been months and I still could not find a neurologist on my
insurance. Everywhere I called said they would not take my case. A friend
suggested I try the medical school. Perhaps I wasn’t clear on the phone, but
each receptionist I talked to there gave me a different answer. I decided to
email the Dean of Neurology one of my Medical PowerPoints hand tailored to
communicate with the medical school, including the slides I outlined above.
Not expecting a response, I worked on school and general
life things. Surprisingly I received an email from a physician’s assistant at
the school, saying there was a neurologist interested in my case who had seen
the PowerPoint. I just needed to fax over my medical records.
Because I had my exhaustive binder, I merely faxed over
copies of my medical records binder. I had an appointment in a week.
Other Tips for Communicating With Your Doctor
If You Do Anything But Be Sick, Mention It!
When you have a chronic illness, it’s important to build
positive rapport with your doctor. This is because you will be seeing each
other a lot! Do you have a dog? Do you write? Do you blog? If you do blog, don’t
mention the name. Do you collect cat pictures or memes? Did you have a spa day?
Are you in school? Did you get a good grade on something? Anything positive
that you do, mention it. Doctors are surrounded by negativity. Please
understand that I am not saying to not tell your doctor what is wrong with you.
That’s the reason you’re there. Just add some glitter to the appointment. Bring
some tinsel but don’t get your tinsel in a tangle!
Do Not Look Pretty for Doctors Appointments
There’s a fine line here. Wear clean, unwrinkled clothes if
you can, but do not do your makeup. Make your hair reasonable if you can. Do
not wear full makeup. I made the mistake of looking my full fancy self when I first
started my journey and the doctors could not see the beginnings of my illness
through all the contouring and bronzer.
Of course, if you’re coming from work, you may not be able
to help this. That’s okay.
I hope this helps
some of you.
Now, a recap:
Pocket full of starlight: thanks to technology, there are
some ways to fight the system.
Pocket full of darkness: why should anyone have to fight so
hard to be seen and heard?