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Lessons from the Field: How to be an Empowered Facial Pain Patient, or Parent

Home » Lessons from the Field: How to be an Empowered Facial Pain Patient, or Parent

Living with trigeminal neuralgia or any kind of facial pain invariably requires some life changes. Potential work disruption, financial or insurance hurdles, and challenges to relationships (romantic, platonic, and familial alike), are commonly “faced” by every facial pain patient at some point. However, there are a few steps that patients can take to empower themselves and increase their chances of daily success in the complicated world of TN.

Arm Yourself with Information

Research, Research, Research. A quick Google search will reveal that there is no shortage of information about facial pain. It is in every patient’s best interest to become as knowledgeable about their condition as possible. Doing so will make you much more informed – and formidable – when interacting with doctors, nurses, pharmacists, and insurance representatives. If you understand how the disease works, are aware of the variety of treatment options, know your rights (especially as a pain patient), and familiarize yourself with insurance practices, you will be able to take a much more proactive and involved role in your care. Being a young patient with facial pain adds an additional challenge. Sometimes because of a young age, not all treatments are appropriate, or safe.

Find Yourself a Robin to Your Batman (or Catwoman)

… and arm them with as much information as possible. Feelings of isolation and helplessness are exceedingly common with chronic diseases. Aside from having a support group, you should find a dedicated individual that will have your back. This person needs to be someone who has a vested interest in your well-being. Further, they should have a strong incentive to be just as (or nearly as) knowledgeable about your condition and the specifics of your treatment as you are. In some cases, you may just need to vent or a shoulder to cry on. But there will also be times when you need someone to advocate for you because you are unable at that time to effectively do so for yourself. While it may be counterintuitive, having someone you can rely on to perform this critical function is integral to your empowerment.

Set Goals

This is your diagnosis, take responsibility for your goals of treatment. What are your goals for this doctors’ appointment – is it medication management or are you looking for surgical treatment. Either way, come prepared with research you have done independently, and with assistance from resources such as the Facial Pain Association and national conferences. You know what has worked for you in the past, use this information to your advantage.

Don’t Settle

If you wouldn’t settle for a pair of shoes that don’t fit right, then why would you settle for a doctor or medicine that is not doing the trick either? Living with TN, or any form of facial pain, is no walk in the park. And you owe it to yourself to get the best treatment that you can. That may mean finding a different doctor who respects you as a patient, or pushing for a different medicine (because it will have less side effects or give you a better quality of life) than the one the doctor writes. You may have to call for a charge nurse or pharmacy supervisor, or appeal an insurance decision. The bottom line is that it’s your life, and you deserve the very best treatment possible.

Avoid the Drama

There will, inevitably, be some naysayers who will try to diminish and/or disparage your pain, or that of your child. Unfortunately, sometimes those people turn out to be a family member, close friend, or even another TN patient. Don’t let them. Stress is not good for anyone and, particularly, not good for facial pain patients. If you find yourself in a negative situation, leave it. While you may miss that person or place temporarily, your face will thank you later!

Note: this article originally appeared in the Fall 2014 edition of the Quarterly Journal. You can view the original edition here.