For me, I am always in pain. Everyday it feels as though I have a constant mild to moderate migraine. I consider that to be a great day. However, sometimes it gets worse for whatever reason, perhaps I woke up and have slept funny, or maybe I smiled too much the prior day. There are days my head/face hurt so bad I don’t want to get out of bed. It hurts to breath, walk (the vibrations go throughout your entire body), touch my face/head, I can’t put my hair up, etc. This pain is unbearable. I would cry, but that would make it 1000 times worse.
I hate being the friend that can’t go jet skiing because it’ll hurt my face or is on a strange diet because food can hurt my jaw. When we go out to eat, there are times my friends/family must try things just to see how soft they really are. I hate being the one who hasn’t been heeled yet. It’s embarrassing. I know it shouldn’t be, but it just is. I can’t explain it.
Here are a couple things to keep in mind when talking to someone with chronic pain:
1) Chances are the pain will not magically go away. I’ve heard people say, “Give it time” and it just infuriates me. Some people have prayed, had surgery, went to a specialist, and miraculously they are healed. For the rest of us, time is not going to help.
2) My sister, brother, cousin, whomever, has ______________________(in my case it’s TMJ) and they do ________________ to help it. The amount of people I know who grind or clench their teeth, or their jaw pops is great. TMJ is not a disorder; it literally stands for Temporomandibular Joint. Having problems occur with that joint or other parts of the jaw is not uncommon. However, everyone is different.
3) “I wish I was on your diet; I’d be skinny”- No you don’t. No one wants to be on a soft or liquid diet for an extended amount of time (in my case years). Yes, I’m skinny, and I am often too thin for my height. I try to eat very fattening foods such as peanut butter, and I drink wine (not every day). I try to gain weight but it’s difficult.
4) “My jaw pops and my dentist/doctor told me that I don’t need surgery and that surgery can make it worse.” When someone shares that tidbit of information with me I always tell him or her that they received great news. What else can I say?
5) “How are you feeling? How’s your jaw?” Sometimes I don’t want to talk about it and so I lie. My answer is either, “it’s great” or “it’s good.” The truth is that it is never good, it always hurts, and that I am tired of it. It’s nice to know that friends/family care, but if I ever tell you it’s good I’m lying.
6) “You look great or you don’t look like anything is wrong”-I might be dressed nice, but everyone who knows me knows that my left eye twitches and droops at times and I am very self-conscious. When I do not want to take a selfie or be in a picture, that is the reason. I know that people are being nice, and I appreciate it, but forcing me to take pictures when I don’t want to can be devastating and leave me in tears. This may appear to be no big deal, but to me it is huge. I use to love my smile, and I can see how my face has changed. If I am not feeling well, taking pictures makes me very insecure and upset. I can easily avoid this by being the cameraperson or sitting the picture out.
7) “Things could be worse”-yes, this is true. However, this is a wildly unfair statement. It’s great to put your life in perspective, but people are still allowed to hurt, feel, and try without feeling guilty that people have it worse than they do.
8) “It’s all in your head”-In my case this is literally true. Lol. However, chronic pain is not something you can ignore. Anyone who suffers with chronic pain will try, but they can’t ignore it for long.
9) “It’ll get better”-How do you know this? Though this is meant to make someone feel better, it just doesn’t. No one knows the future. It may get better or it might not, no one knows. As much as I am the eternal optimist, I have come to terms with the fact I may always hurt.
I love and appreciate the fact that my friends and family care about me. I know that they ask questions and share any tidbit of information they find out about jaw issues with me because they care. In fact, some of the information they have shared has truly been helpful and much appreciated. I know that they think of me and pray for me often. I am truly blessed in that regards. I am lucky that they are in my life!
Some of my list was compiled from what other people have shared with me about chronic pain, and some of it is from my own experience. No matter what, I am optimistic that one day I will no longer be in pain and that I will resume a some-what normal life. I will never lose hope.
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