Part of having a chronic condition like facial pain is that it can be a constant. Some may experience its horrendous pain daily, while others may go in and out of flares; regardless, for some extended amount of time, the sufferer often feels at the mercy of their facial pain.
Having had facial pain for as long as I have (a little more than fifteen years), it has become normal for family and friends to know that I suffer from this condition, and often they expect me to be in some amount of pain. Pain becomes the norm for me and seeing me in pain becomes the norm for them. It makes sense.
But what about when the pain is extra bad, the episodes extra excruciating, and the battle every single day is wreaking havoc on you, because it is common for you to have this condition, you feel people forget about how bad it can be for you.
Feeling forgotten is awful for anyone, even if it’s just the perception of being forgotten; regardless, it can be one of the loneliest moments for chronic illness patients. On the one hand, you understand that others have their own lives, and well, it’s normal for you to be sick, and you get that, but on the other hand, you just want someone to acknowledge how intense and painful life is for you right now.
One of the struggles I (and I imagine many with facial pain) have struggled with is knowing whether to be honest about my pain or to toughen up about it. I tend to underplay how much pain I am in and how dark life feels because of the pain. Good moments can feel interrupted or stolen completely from me because of the intrusion of an episode of facial pain. I withdraw to lessen the pain, which can look like me withdrawing from the touch of a loved one or not wanting to engage with life if it could be potentially painful. Sometimes I feel loved ones and friends don’t fully know how much I’m suffering physically, emotionally, and mentally. Maybe you are feeling the same or have felt the same in the past.
Dealing with chronic pain, such as facial pain, is overwhelming. We can easily feel defeated or slip into a depressed and anxious state. Our friends and loved ones can be a huge help, but sometimes we must remember to let them know that although pain is common for us, it doesn’t always mean we feel strong enough to face it every day, and we need help. We need validation. We need them.
Sometimes we must take the initiative and be blunt and admit to those we love and who love us (or to a therapist) that we aren’t okay, and we need support. Sometimes that looks like saying, “I know I am used to the pain, and I’m strong, but this is bad, I’m scared, I feel forgotten and alone. And although the sun is shining brightly, my world feels gray and cloudy because of this awful pain. I need support.”
Often, as chronic pain patients, we feel the need to hide our pain and how bad it is, maybe to protect our loved ones, because we feel like our pain (and ultimately, we) are a burden, or perhaps we just don’t have the energy to communicate.
But allowing and accepting support can truly help. One of the things that can help most with chronic illness is being validated and heard. I think it is often the life preserver that is thrown to us into the crashing waves of pain.
Sometimes we just need someone to ask us genuinely how we are. And for us not to feel like we have to mask the truth. Because often for us the truth is ugly, it’s painful, and even scary at times. We need someone to have big enough shoulders and sit amidst the pain. Sometimes we need to ask someone to hold space for us, authentically.
We need to feel not forgotten.
If you need support and need to be reminded that you are not alone, the Young Patients Committee is here for you. We understand and will hold space for you. Email us to check out the ways we can support you!
You are not forgotten.
