After a lifetime with migraine, Jaime Sanders learned that she had to be her own best health advocate. Here's how she does it.
Living with chronic migraine has taught me that my voice is my most powerful tool for managing my health. No one told me how to advocate for myself. It took experiencing many things, both good and bad, to find my voice and the confidence to use it.
It takes time, but once you learn to advocate for yourself and create a proper action plan, you’ll be able to help manage your migraine symptoms and may even improve your overall quality of life.
The following seven practices help me manage my condition. By following these I have created a comfortable environment so that migraine doesn’t overwhelm my life.
1. Prepare questions
Before any appointments with your doctor, make a list of questions or concerns you have. Most appointments are only 15 or 20 minutes long. It’s important to get the most out of them.
If you keep a headache journal, bring it with you to show any changes in your migraine symptoms. Write down any new side effects or things you may be experiencing. If your doctor is active on email, send your questions ahead of your appointment so they’re prepared when you arrive. If you run out of time during your appointment, ask your doctor to email you with the answers to any of your outstanding questions or concerns.
2. Create a protocol
Creating a protocol is one of the most helpful things I’ve ever done for myself. When my migraine pain is so bad that I need to go to the emergency room, having a protocol handy allows the hospital staff to respond accordingly.
If you don’t have one already, create a protocol with your doctor at your next appointment. My doctor and I came up with two so that I can be helped as quickly as possible in emergency situations.
Have your doctor type your protocol on a document with a letterhead and sign it. This is your prescription for emergency care. It will save you a lot of time and decrease your anxiety about emergency situations.
3. Stay organized
I have a lot of paperwork regarding my condition. It used to be scattered in different places. I needed to put it all in one location, so I created a migraine binder. It’s part of my advocate toolbox.
The purpose of the binder is to legitimize my migraine and document my treatments. I use dividers to separate everything into the following sections:
- Medications. In this folder, I keep a current list of all my medications and the informational inserts that come with my prescriptions. I update it regularly with any changes.
- Allergies. Here, I list all allergies I have to medications, food, and anything else.
- Protocols. This is where I keep a copy of my two emergency protocols.
- Upcoming appointments. It’s helpful to have a list of future appointments for your reference. It may also be useful to have this in case your doctor would like to see what appointments you have coming up.
- Discharge papers. Keep any discharge paperwork or information received after your appointments in this folder.
4. Ask for accommodations
If you’re living with chronic migraine, you have a right to ask for reasonable accommodations to complete your work and be more productive. For instance, you can request to:
- have the lighting changed to decrease any headache pain
- have your workstation moved closer to the water cooler so you can stay properly hydrated
- switch to an ergonomic chair to alleviate any migraine symptoms related to posture
Some companies allow employees to work from home. If this is an option for you, ask if you can work remotely on days when your symptoms flare up.
Also, ask your human resources department about the Family and Medical Leave ACT (FMLA) process. You can use FMLA for doctor’s appointments, treatments, emergency care, or taking time off if you have a severe migraine attack.
5. Set boundaries
It’s important to say no when you have too much on your plate. Don’t feel guilty if you have to turn down a lunch date with a friend or if you need to leave early from a party. Listen to your body. If you begin to feel overwhelmed at work, sit down with your supervisor to see if you can get an extension or help from a co-worker. It’s OK to ask for help when you need it.
6. Give yourself a break
It’s impossible to do everything and be everywhere at the same time. Allow yourself to take time off. It’s not your fault you have a chronic condition. There are going to be days when you can’t tend to your responsibilities or obligations. That doesn’t take away from your value or importance to others. It’s not selfish to take time off to care for yourself.
7. Advocate for yourself
It’s natural to want to help your loved ones and put their needs ahead of our own. However, if you don’t take care of yourself first, you won’t be able to take care of others as effectively. Take time to meditate, go for a walk, exercise, or partake in your favorite hobby. Do what makes you feel good. Don’t neglect the things you need to do to be happy. Learning to put yourself first is key to managing your condition.
Advocating for yourself means doing what is best for you in all areas of life. Find your voice and use it to create a stress-free environment. You’ll be surprised by how empowered it can make you feel.
The information presented is solely for educational purposes, not as specific advice for caregivers or the evaluation, management, or treatment of any condition.