A guide to surviving doctor’s visits with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome.
Going to the doctor is supposed to help you feel better. But if you have ME or CFS, the exertion of leaving your house and going to the doctor can make your symptoms worse. (For days! Or weeks! Or longer!).
This is called “Post Exertional Malaise” or “Post Exertional Neuroimmune Exhaustion”. Some people just call it “crashing.”
Below you will find a great collection of tips and ideas for how to survive days at the doctor. Artwork by Elizabeth D’Angelo. Writing by Rebecca Weger, Ricky Buchanan and the wonderful members of the Facebook group 25% of ME: Support Group for Severe ME
Why Do We Crash?
- How Exertion Affects People with ME
- Exercise Intolerance (peer-reviewed articles)
- Exercise Intolerance (quotes from ME experts)
- Opposition to Graded Exercise Therapy for ME/CFS
- How Do I Know if I Have ME?
Finding a Doctor
- Some doctors are able to offer visits by phone or skype.
- Some areas have services that offer home doctor visits.
- If home visits, phone, or skype are not possible, we hope some of the ideas on this page will help.
Scheduling & Planning
- Schedule rest days before and after.
- Arrange for a ride with a wide window of time before appointment.
- Schedule aide or friend to arrive early to help with coat, shoes, wheelchair, etc.
- Make a dinner plan for day of appointment.
- Ask a friend or aide to read through this page with you.
- Don’t try to do everything on this page. Just pick a few things you might find helpful.
Prep for Appointment
- Prep for appointment several days before.
- Pre-pack bag with supplies
- Fill out paperwork, gather information, update meds list.
- Create list of health updates and topics to cover with doctor
- Do any bathing at least a day before.
- Prepare snacks and water to be on bedside table (in case you cannot get out of bed the day after the appointment).
What to Pack
- Pillow and blanket
- Papers, pen, wallet
- Water, snack
- Cellphone, if needed.
- Phone number of taxi or medical transport, if needed.
- Wheelchair, walker, or medical equipment
- Insurance card, if needed
- Extra sweater if needed
- Earplugs and sunglasses if needed
- List of health info and things to talk about with doctor (see below)
- Helpful if lying down on floor: Monkey Mat
Some people find it helpful to prepare accommodation requests ahead of time. For example, if you need lower lights, quiet talking, reclined table, wheelchair assistance, or other needs. Here’s a few options for how this could be done.
- Contact doctor’s office ahead to make any special requests for assistance or special accommodations you may need or
- Write down any special needs or accommodations and print several copies to bring with you to hand out or
- Write down a list for yourself for your own reference while you are there, and then just ask for what you need or
- Write down a list and review it with your friend or aide ahead of time so they can help advocate for you
- If you don’t have a wheelchair, contact doctor’s office ahead of time and ask if they can provide one.
- If you don’t have someone to push the chair, ask if they can provide someone to come out to car to meet you with chair.
- Some people find it helpful to use a manual wheelchair pushed by someone else, instead of electric wheelchair. Operating a power wheelchair takes much more focus, concentration, and energy.
- In the US: Programs that provide wheelchairs/medical equipment
- Also: Getting insurance approvals for electric wheelchairs
- Forgive yourself if you need to reschedule. If your body says no, listen. 💖
- If your doctor’s office charges a last-minute cancellation fee, your doctor may be willing to go to bat for your to get it waived in this situation. It’s worth asking.
Day Of Doctor
- Drink plenty of fluids, get enough salt.
- Don’t bathe the same day.
- Do not get dressed before appointment. Wear pajamas or whatever you already have on. Don’t wear shoes.
- Ask friend or aide to assist with getting together coat, shoes, snacks, anything that would cause you to have to move around
- Rest and ask for help BEFORE you start to crash. Don’t wait until you have after you have gone over your limit.
In the Parking Lot
- Use wheelchair (from car door throughout visit).
In the Waiting Room
- Don’t go up to front desk. Immediately lie down in waiting room (ask friend or aide to check you in)
- Ask for music in waiting room to be turned down (or have friend ask).
- Alternately, ask if there’s somewhere you could lie down while you wait. Or get whoever who checks you in to ask. Often there’ll be an unused room someplace and it’s TONS quieter than waiting room if possible.
- If you find a room to rest in, turn the lights off while you wait.
- Lay on the floor in the waiting room. It’s kind of gross but less bad than sitting on the chairs and feeling like you’re dying.
- Bring a rubber yoga mat for lying on floors.
- If you have a compromised immune system, tell the receptionist, especially at Urgent Care or the ER, they can put you in a room away from all the germy people in the waiting area, and you still keep your place in line. Most places have a room for this purpose.
Transporting to Exam Room
- Request to skip scale weighing / standing up.
- Ask nurse to turn down or turn off fluorescent/overhead lights in doctor’s office. Ask nurse if they have a smaller, less bright light that can be kept on during the doctor’s visit.
- If you haven’t brought your own blanket, request one from the nurse.
- Ask to adjust examining table to be reclined
- Bring rolling chair or table near you so your bag with snacks, water, and notes will be within reach.
- While waiting for doc to come in, try to sleep/rest in darkness
- Bring list of what to talk to doctor about. Follow list carefully in appointment and take notes.
- If blood needs to be drawn, request if they can come in and draw it where you are already lying down, in doctor’s office
- Stay reclined/lying down while talking to doctor
- Bring someone with you to take notes or ask permission to record your appointment for later reference
- If a friend or aide is waiting for you, stay in exam room and call them to come get you and help you with wheelchair, bag, blanket, etc. Or ask doctor or nurse to go into waiting room and find your aide.
- If you are traveling alone, ask nurse or front desk to call taxi or medical transport for you
Throughout the Day
- Request quiet voices if needed
- Bring snack. Keep it on your wheelchair, near you.
- Do not do ANYTHING else that day. Especially: never ever try to bathe the same day.
- “I never touch anything in the waiting area for this reason: doorknobs, magazines, arm rests of chairs. I have my own pen. We also wash our hands on the way out of the building.”
- Arrive. Lie down. Check in. Lie down. Go to exam room. Lie down. Finish appointment. Lie down. Go home. Lie down.
Getting Help (in the US)
- Programs that provide transportation
- Programs that provide home aides
- Programs the provide home doctor visits
Readers Write: What’s The Best Time To Go To the Doctor?
- Don’t be tempted to take the first appointment available if it is anywhere near your normal sleep schedule.
- If you are able to cope with early mornings take an early morning appointment to lessen the chance of a doctor running late.
- For me, it also works out well to take first appointment after lunch break at 2pm.
- I schedule appointments only for afternoons.
- End of Day: At the end of the day works for me. Doctors always make up lost time before last appointment. In my experience I find it that they are more relaxed knowing their day is over. They don’t rush and listen better.
- Schedule your appointments for your best time of day. I’m so crashy by afternoon, I can’t go anywhere. For me, gotta be mid morning, if anything.
Reader’s Write: How Do You Make a List of Health Information?
- I always make a list way beforehand. When I get to the doctors I can just hand them the list, and I don’t have to talk much. I make the list on my phone, so I know I won’t forget it, and I add to it anytime I have a health question. It’s an ongoing list as my health crises are ongoing too. It’s a good habit I’ve picked up.
- I use the “notes” app on my phone and chart my symptoms, any follow up items, and to-do. I also try to put fax and phone numbers for relevant things. Sometimes I email it to my doctor right before I go in so we can go over quietly and I don’t need to overdo it.
- I have a 2-3 page “Reader’s Digest” version of my health history with bulleted items like allergies, surgeries and current issues. Ever doctor I see appreciates the brief info. I also have a page of medical contacts and another of my current medications/supplements/herbs. I hand deliver these at the start of the visit.
Rebecca Organizes Medical Appointments
Several days before my medical appointment, I open up OneNote on my computer. In “Doctors and Records” I add a new page. I title it with a consistent naming convention, using the date of the appointment: “Year.month.date Doctor Name”.
Once I have my page, I start writing my agenda and talking points. These are the most important points for me to consider:
- What is it that I’m hoping to get out of this appointment?
- What is my status update since my last appointment?
- What are the most important topics to cover?
- What questions do I need answered?
- Is there something I keep meaning to tell her but never get to?
- What information does the doctor need to know?
- Is there data I need to share?
- Are there actions I’m asking the doctor to take?
But wait! There’s more! Read the rest of Rebecca’s Amazing System for Organizing Medical Appointments
If you are applying for disability. Or already on disability:
- How to Have Doctor Visits That Create Accurate Records
- How Talking to Your Doctor Can Help (or hurt) Your Disability Case
- How to Find a Doctor to Help With Disability Documentation
More Tools to Take Care of Yourself