Using Technology to Advocate for Yourself as a Chronic Illness Patient

Yesterday I went to a neurologist at a research hospital about an hour and 30 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 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. I was out of money and begging for it but 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, many 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 doctor’s appointments. 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.

Here are a few tips on how to speak up for yourself.

Patient Advocacy: How to Talk to Your Doctor

1. Purchase a cheap tablet.

Ease and convenience is key for a spoonie when we need to hunker down and get some stuff done. I bought an Amazon Fire tablet and it’s a gem. If you have an iPhone or iPad, you can use the Keynote app to create the following:

2. Create PowerPoints for each and every doctor’s appointment.

For each appointment, put the name of the doctor, their specialty and date. You can copy PowerPoints to create others. Include a timeline of what symptoms started when and major life events, complaints, symptoms you have experienced in the past two weeks, 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).

3. 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. 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 can help guide the conversation, fight brain fog, and ultimately make you appear intelligent, organized and worthy of respect.

4. Once you have acquired the tablet and created the PowerPoint, go the appointment and hand the tablet to the doctor.

If you say “I have made a PowerPoint I want you to look at,” your 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 OK 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.

5. 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 to ask for a write-up at the end of every 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, 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. I had an appointment in a week.

Other Tips for Communicating With Your Doctor

6. If you do anything but be sick, mention it!

When you have a chronic illness, it’s important to build a 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, you may or may not want to 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!

7. Do not look pretty for doctor’s 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 OK.

I hope this helps some of you. Advocating for yourself is often difficult and scary, as doctors are somewhat literally their own animals who speak their own language. As with all humans, we merely have to learn how to get on each other’s level.