The Do's and Don'ts of Talking to Your Loved Ones With Chronic Pain

I have many many health issues. All of which cause pain.

I try to be positive. I smile, I hide my pain as much as I can. I’m good at that. I was raised to have self-control…almost to a fault. I was tough for so long, working with my back literally broken and 100 percent slippage, only to later find out that my initial diagnosis (about 33 percent slippage) was enough to keep most people in bed. I say this to show that I have a high pain tolerance…or maybe I used to.

I have had two back surgeries, the last two and a half years ago. The pain has not gone away. The sciatica pain, the sharp pains on my sitting bones, low back, none of it. I recently had all the tests – MRI, CT scan, X-ray. Guess what? Everything is healed. I am having some kind of residual pain, similar to phantom pains an amputee has.

Although it is fairly common, doctors cannot explain it. They do know, however, that it will not go away. Pain management is my only choice. I am having the screws removed because, “There is a chance it might give me some relief.” The doctor has made it very clear that’s a very small chance. He has also stressed that best case scenario, it will be a little – not a lot, not some…a little.

So this leads me to what not to do when discussing somebody’s permanent pain.

1. Understand I am explaining what the doctor said. The outcome is bleak.

2. Do not tell me to think positive, or that the body does amazing things. I am positive most of the time. However, I am not going to get anyone’s hopes up. I am conveying actual scientific facts. Do you really want me to say, “After the surgery, my fibromyalgia and arthritis and back pain will be gone. I will be the next million-dollar woman?”

3. Do not try to help me figure out jobs I can do. If I felt there was a chance I could work, I would. Social Security does not pay that much. Sitting at home is not my life’s goal.

4. Do not compare me to others. Someone asked me about Social Security “Can someone be on Supplemental Security Income (SSI )for 20 or more years? What about wounded veterans? Do they just go on disability because they were wounded?”

5. Do not assume that because I was able to spend a few hours out of the house means I am OK. I was able to have a low pain day. I decided that it was worth the pain. I was able to do it. Most of the time, it’s just not going to happen. Today it did. I’ll spend the next few days in bed. I’ll be hurting, but also grateful for the experience.

6. Do not suggest chiropractic, massage, vitamins, diets, yoga, etc. It’s likely that I have tried it, it’s not in my budget, or my doctor said not to. You do not know more than my doctor. Most likely, you don’t know more than I do. I know more than some of my doctors, especially the new ones. Without my full health history, you can’t know everything.

7. Do not think, even for a second, that you know how I feel. Yes, I’m sure it hurt when you pulled a back muscle. Yes, I have told you about some of my symptoms, and you might have even seen the mask slip. But nobody can truly know another’s pain. Even if you have all of my conditions and pains, you wouldn’t know. We all handle our pain differently.

8. Most of all, do not ask if it could be psychological.

It’s difficult enough, wondering if I should just “suck it up” or thinking it is in my head, etc. But, if it was, my doctor would tell me.

So, with that said, what should you do?

1.  Support me. Tell me how strong I am.

2. Know that I tried. Empathize with the fact that I am frustrated at not being able to work. Give me credit for all things I can do, despite the pain.

3. Understand that just because someone lost a limb, has head trauma, more surgeries, and even issues that are more easily diagnosed does not mean my pain is less.

4. If you wonder how I can go out, do me a favor. Pay attention to the days I stay in bed. Pay attention to the times I can’t stand up straight. Ask questions. Or be happy for me. I actually got to be around someone who wasn’t a doctor or someone I see every day. I got to enjoy myself. Because guess what? I was hurting during the outing.

5. If you do have a treatment that you think I don’t know about, mention it in a caring way. Don’t bring it up in a way that I have to defend why I don’t or even tell you if I will. Example, “I heard that XYZ might help someone with your condition. Let me know if you’re interested.” Then talk about something else. Don’t expect an answer unless you are inviting me, and you are paying.

6. Acknowledge that you can only imagine how I feel. Let me know that you care about my pain, and, more importantly, about me. Pay attention, we’re all different. Some people want you to say you know they’re hurting. Some want you to accept the answer and distract us. Ask if I mind telling you about my pain. Research my condition(s). Read blogs of people who have similar issues. Join a support group for people with my condition(s). Don’t come back and tell me. Just use it to empathize, remembering that I won’t have exactly the same experience.

The important thing to remember is not to make me feel as if we need to defend myself. I kick myself enough. I have to grieve, over and over again, the loss of who I was, or want to be.

The worst thing you can do to a friend, co-worker, family, etc. is to make them feel that you don’t believe their pain is real, or that it is their fault. We are the ones who have to deal with it. Not you. We will have good and bad days. Some of us will wallow in our misery, whether from a bad day, new diagnosis, failed treatments, or even just because we tried to dance, not thinking, and were reminded that the dancing days are gone. We need to do this. We will also have days where our pain is not everything and the world is beautiful and we have so much to be grateful for. Let us enjoy them, we really need these. There will lots of days in between. We need these, too.

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