The Squeaky Wheel Gets the Oil
Last updated: June 2022
One of the most challenging things many of us with chronic illnesses have to face is trying to advocate for ourselves in the healthcare system. Somehow, it just seems wrong that when we are the sickest, we often have to push the hardest. Timely and appropriate medical care should not be such a challenge, yet… sadly, it frequently is. Whether it’s due to insurance denials of medications, referrals that somehow get “lost” in the system, or administrative staff forgetting that healthcare should be patient-centric...the reality is that the squeaky wheel gets the oil first.
Fair? Not at all! However, it’s an unfortunate reality that many of us have to live with. Here are 5 tips and ideas to help you be that “squeaky wheel” when all you want is to curl up in a little ball and pray for relief! So don’t give up; we’ve got your back!
Remember your patient rights
Hard though it may be to remember, you actually do have rights as a patient. Some of those rights include access to timely and appropriate care, respect from your healthcare providers, and written explanations about treatments, denials, and ways that you can appeal. Every insurance plan is different, and every medical group (if you have one) is also different. However, one thing that is a commonality in the healthcare system is the ability to appeal when a treatment or provider access is denied. The key here is knowing the system that is your own specific healthcare plan and then being willing to stand up for your rights. Often easier said than done, but that leads us to the next tip!
Draw strength and courage from others
One of the most amazing things about the migraine advocacy community is that it is full of people who understand. Remember those days when you thought that you were the only one going through this? No more! Now you can reach out to others who totally get it and are more than willing to send virtual hugs, tell you that you’re not crazy, and give you the strength to keep on going. Migraine tends to isolate us, but when we connect with people who also live with this disease, suddenly we are no longer alone, and we are stronger and more courageous because of that.
Reach out for help when necessary
While self-advocacy is essential, there are times we also need help. Help could be as simple as asking for ideas on how to deal with insurance and information about access programs, or getting practical help from advocacy organizations such as the Patient Advocate Foundation. It could mean someone going to a doctor’s appointment with you for moral support or just getting a hug when you feel discouraged and want to give up. Reaching out for help doesn’t mean that you are weak – it means that you know your limitations and realize that together we are stronger.
Keep notes about everything
All I have to say is “migraine brain,” and I’m sure most of you will immediately know where I’m going with this! Migraine seems to bring cognitive challenges, so never rely on your memory! When you call your insurance, write down the dates, times, and names of everyone you speak to. The same with your doctor’s office or pharmacy. Make an action plan in a place that you won’t “forget it,” such as calendar reminders. Take away the stress that comes with trying to remember and put everything down on paper or on your phone where you can easily find it. Then, when you follow up on issues, you can immediately start with the prior information and request next steps be taken.
It’s okay to take a pause
It is physically and emotionally exhausting to fight with the healthcare system, and sometimes we have just had enough. If you get to that point where you can’t face making another phone call or sending another email, then pause. Give yourself an hour, a day, a week, or even more, if necessary. Recharge, connect with others, and then jump back into the fray when you are ready and able. It’s okay to take a pause, as long as you don’t give up!
Migraine is not your fault
Most of all… remember that you are worth it! Chances are, living with migraine means that you face stigma in many areas of your life, and it’s easy to start to lose sight of your value. That’s when it’s time to refocus, regroup and remind yourself that it is not your fault that you live with migraine. You are worthy of respect, love, and kindness. If it takes some squeaking to help you get the medical care you need… that’s okay!
Are the family and friends you will be seeing this holiday season understanding about migraine?