Don’t let fear run the show.
If you let it, fear will actually make the pain worse due to the stress involved and can undermine your judgment if you allow it to. The first step to taking control of your facial pain is to understand that fear of the pain is normal, but you can stop it from ‘running the show’. Some medications can add to that effect because they are strong and sometimes cause one to feel “off center”. Anxiety actually undermines a person’s ability to gain clarity at a time when it’s needed most.
Have an advocate.
Besides yourself, it is so important to have an advocate, such as a friend, partner, family member, someone else in the facial pain community helping you along the way. Building a network of support, even if it is one person, can be extremely helpful and give you a sense of comfort and safety.
Slow down/take your time.
Whether you are building a career, raising a family, supporting yourself, or have other obligations, the sense of urgency to get the pain under control quickly might lead you to make hasty decisions. There are various treatment options for facial pain, and it is important to take the time to gain an understanding of the benefits and risks. Experience suggests more than one consult with expert practitioners who have proven track records. Facial pain and the anticipation of it are frightening. As difficult as that fear is, it is so important to take time to gain confidence that any action being taken has the best odds of being right for you.
Become well-informed.
Do a solid amount of reading, research, networking, and physician interviewing before you make any surgical or treatment decisions. Ask questions- don’t hold back. If your questions are not received well, that is a red flag. The decisions you may make will impact your life going forward. Know how to describe your pain.
It is extremely important that you learn to describe your pain well to those working to treat you. Is it stabbing, shocking (electrical), burning, intermittent, constant, what # on a scale of 1 to 10, and where? It’s not easy, but you’ll need to learn how to be your own best advocate. It may help to keep a daily log so you can better remember and describe the pain patterns. Often you’ll be assessed by how you look too, which can work against you if you look OK and can’t describe your hidden pain well. Seek a clear diagnosis before taking action. Different treatments and/or medications have varying degrees of success, depending upon your diagnosis.
Learn about medications and complementary therapies.
If the first attempts at a medication don’t work, don’t give up and assume that you have no choice but surgery. There are a number of medication combinations to try before you give up on medications. Alternative treatments or therapies can also help you reduce and manage your pain. Remember, one size does not fit all. When you hear about or read of someone’s experience, it does not mean that you will have the same experience or reaction. We are each so unique with very different medical histories. A medication (or treatment) that works for one person may not for another person. In general, pay attention to the odds of those things that research indicates are more successful and ask others about their experience.
Get more than one opinion.
If it comes time for you to consider a treatment or surgery, make sure to get more than one expert opinion. Many of the top surgeons will do phone or video consultations. Try not to wait until you are at the end of your rope to get more than one opinion; otherwise, you will be likely to opt for local convenience (which may or may not be your best choice). You also need to understand what your insurance will cover, so begin to make those calls and contact your insurance company to get more information. The medical center you choose should also help you navigate and work with your insurance company.
Trust your instincts.
You know yourself the best. If in doubt, wait until you come to a place of your own internal peace with any treatment decision you make because research suggests that a person’s mental and emotional state do matter. Sometimes, choosing the right surgeon or doctor for you comes down to gut instinct.
Modify your expectations.
Facial pain changes things, for you and for others around you. Some people will have empathy and be understanding, some may not understand your condition entirely; some will be wonderfully supportive, and others may be pretty disappointing. While some reactions may hurt, the truth is that they are not about you- the person giving you that reaction has his or her own limitations.
If facial pain starts to limit your life and you cannot work or socialize, have pain when talking or trying to eat, you can feel pretty isolated. Because facial pain is an invisible disease, you may often be misunderstood because you don’t look nearly as bad as you actually feel. To expect yourself to still function in the same ways that you did before facial pain will only set you up to judge yourself as falling short. Instead, find ways to lighten up on and distract yourself.
Don’t ignore your stress.
Stress is a pain trigger, so it is important to minimize your mental and emotional distress. Express yourself-don’t hold it all in. As hard as it is, it ends up being very helpful to reach out, share your thoughts and feelings, and ask for help when you need it. Others with facial pain experience don’t feel put upon, but instead are glad that their experience might help someone else have a better one. Sharing with a support network gives us a place to “belong”. It helps to take the edge off because these are people who truly ‘get it’.
Learning from each other, caring, and sharing with people from all over (whom you otherwise would have never met) can be a true lifeline. Hang in there! Remember, most people now free of facial pain are out there living their lives. Take things one day at a time, believe that something positive is possible, and know that you are not alone in this journey.
