Relationships with loved ones are complicated and require time, energy, patience, and understanding. All of those become more difficult when facial pain is an added variable. Facial pain can put the best of relationships to a test, and being a young patient can make finding (and keeping) the right partner even more challenging. Facial pain can stop a young patient from doing “typical” activities that a young person might enjoy: attending concerts, going to movies, singing, dancing, or just staying out later with friends. Below are some tips and tricks to help you establish and maintain a successful relationship, despite dealing with facial pain.
1) Be honest
Honesty is a key in all relationships, but even more so when you have facial pain. Whether you like it or not, facial pain is a part of your life. If you meet someone new and want this person to be part of your life, you should tell them about your pain and how you are feeling. Being honest will prevent the partner from having to “read your mind” about your pain, triggers, and what and when you are able to do things. For example, facial pain might change your weekend plans to go hiking because it is too windy out, but your partner should understand the reasons for your hesitation and understand that the change of plans will keep you in less pain.
2) When to tell?
When should you tell someone about your facial pain? If you are in a relationship, chances are your partner is aware of your various doctor appointments, medications, etc. But it can be trickier if you are just starting out. We all have experience with when is the “right time” is to share very personal information with the person you are dating. What if your first date went like this: “Hi, my name is …..Oh, and I have this medical condition called trigeminal neuralgia. It’s a rare disorder and extremely rare for someone my age.” Perhaps that’s not the first thing you want to tell the person. Or, well, maybe it would be something to keep the conversation moving. Use your judgment. Just like treating your facial pain, there is no specific, one-size-fits-all answer. Romantic partners may eventually become caregivers, so it is important that they know the challenges you face. And if being in a relationship with someone who has trigeminal neuralgia is not something they can handle, they probably are not the right person for you.
3) Education is key
Trigeminal neuralgia is not typically something the “average” young person knows about, understands, and accepts. Patients need to educate their loved ones about a lot of factors: triggers, medications, treatments, what to do in the case of a severe attack, etc. A mistake that is made too often is not explaining what our condition is and how it impacts us, but instead just getting frustrated when a partner “doesn’t understand.” How can we expect them to understand if we don’t educate them?
4) Communicate, communicate, communicate…..
Communication is important in any relationship, but even more so when your partner may be acting as a caregiver from time to time. Allow an opportunity for your partner to express his/her needs or feelings about this role if he/she is feeling overwhelmed. If so, are there ways to work through it. Make sure your partner has “time off” every so often to take care of him/herself. It is not just the patient who is going through this awful experience; partners, family, and true friends are along for the ride, too.
5) Touch or no touch day?
Pain can fluctuate by second, minute, day or month. In the case of a romantic relationship, your partner might go to give you a kiss, yet you end up curled up on the floor in a ball because of such horrific pain. Tell them the trigger and make sure they know that you want and appreciate the affection but don’t want to end up in more pain. Naturally, we fear something that causes us more pain. Educating your partner about the inconsistency of facial pain and communicating about how you’re feeling on a regular basis can help them better support you.
6) Talk about the side effects
If you are on medications to treat your facial pain, chances are that you are going to experience some side effects. These side effects may occur every day, or they may only occur when the dosage is changed or a new medication is added. Each body reacts differently to the medications. It is important that your partner be educated on the possible side effects of the medications. Some can leave the patients feeling lethargic, unsteady, moody, or with a decreased sexual drive.
7) Be my cheerleader
Explaining trigeminal neuralgia to everyone in your circle can be exhausting – co-workers, friends, family. It is important to have someone in your corner to advocate for you and help you navigate all of the relationships in your life. Furthermore, you may want your partner to accompany you to doctor’s appointments, as it can be helpful to have another perspective on how you are impacted by pain, medications, etc.
8) Follow my lead
Trigeminal neuralgia may create a lot of limitations in your life. When you are having a better day, take the initiative to make plans with your partner. Suggest you go see the movie your partner wants to see. Go for a walk because the weather is nice (and not windy). Show affection when you are willing and able to receive it. This can alleviate potential uncertainty on your partner’s part.
9) I’m still me!
Just because you have a diagnosis does not necessarily mean that you are a different person. You are not a trigeminal neuralgia patient first but you are a person WITH trigeminal neuralgia. While it is important for your partner to listen when you want to talk, you probably do not want to talk about your illness all the time. Ask your partner to talk to you about the silly thing he/she saw on the way to school or work this morning, that funny video on Facebook, or hey, even that hideous outfit someone was wearing. We don’t want to talk about pain all the time, and a sense of normalcy combined with some humor can help.