What Do You Need?

A cure, I know.

Over the years I have recieved many emails and comments from parents and spouses of people suffering from NDPH. The questions are almost always the same. They always contain the same desperation.

How can I help them?

What can I do?

I’m still struggling with the answer.

I want to know that the people around me care about how I am feeling on a daily basis. Then again, I don’t want to be nagged.
When I say “I’m okay.” It really means I’m dealing well. Often though, when I say that, I am met with,  “Oh!  I’m so glad you are doing better!”

That’s not what I said.

Maybe people with chronic pain have their own language. I seem to. Unless I go into great detail about how I am feeling, people don’t get it. And when I go into great detail, they get discourgaged, walk away and don’t ask again for a very long time.
Don’t walk away.
Don’t ignore it.
Don’t pretend the pain doesn’t exist, but don’t focus on it all the time.
Help me get my mind off it.
Ask me what I need, because it changes day to day, hour to hour with the pain.

If you look closely, you can see where someone is struggling. For a while, when my girls were younger, a nap would have made all the difference  in the world. Once, a friend took the time to research for me. I felt so incredibly supported and realized that I was really lacking the support I needed on a regular basis.

Our experience needs to be validated. DO NOT minimize the pain or the effort it takes to get through the day. DO NOT compare NDPH to that migraine you get once a month. It’s not even in the same ball park.

NDPH makes the people around us feel out of control, that is, if they fully get it. And maybe that’s the closest to our world that they will ever get.
Good for them.

What do you need? What would you tell your spouse / mother / friend to do to help, if you could be  totally and completely honest?

Please share your thoughts in the comments.


Comments

What Do You Need? — 6 Comments

  1. After having these headaches every day for almost 18 years, I’ve experienced many emotions dealing with the pain and trying to live as normal a life as possible. If I could be totally honest with my husband and my family, i would ask they would validate my pain. I always feel like I’m defending myself if I don’t feel when and I’m not working around the house or I can’t participate in something. I don’t want to talk about the headaches, I just want them to understand that it’s always there, maybe different pain levels, but always there. I don’t want to feel like they think I’m a hypochondriac. I want them to understand that I have an illness and I would prefer to feel good like everyone else. Sometimes I just want to run away and be alone rather than feel like I am irritating everyone. I feel angry at times and sad.

  2. I want people to understand that even though I function on a daily basis by going to work and participating in activities does not mean I am not in pain. I have learned to mask it as best as I can but it is still there, all the time. Just be mindful of it that’s all and for the record, I don’t care how bad your headache hurts when your hungover or tired or hungry or whatever the reason is…. it will never compare to what my NDPH suffers and I deal with everyday.

  3. Since I’ve had a headache non-stop for almost 38 years, I’ve learned to keep my schedule minimal, but active enough to feel productive. I would want my friends and family to understand that each day is a battle, so I don’t take on many obligations that will drain my energy bank. Just keeping house, working in the yard, handling the bookkeeping, and running errands is enough. Also, my lack of interest in social activities has nothing to do with them. I hope they do not to feel rejection when I would rather be home alone. It’s only my way of reducing the extra stimulus that tends to cause the intensity of my pain to increase. Typically, the later in the day, the worse my pain is. This keeps me from doing much in the evening time except the basics at home.Terri L

  4. Thank you for posting this. I am always checking myself when talking to my daughter who suffers from (what I believe to be) NDPH. I’ve listened to her complains about the things she gets tired of hearing and I try to be mindful, not to ask too much…or too little. When you mentioned that feeling “okay” does not mean you are better, I knew exactly what you meant (or at least I knew what you meant as much as a person who isn’t feeling your pain can understand).

    It is a different language. One I hope to learn well.

  5. If I could be completely honest… I’d ask someone to clean my bathroom! Funny but true. The chemical smells, bending and reaching, plus doing all that within a small space are not a good combination for me.

    I love your point about not minimizing anyone’s pain or valiant effort.

  6. What do I need? Hugs. Lots of hugs. The kind of hugs where I can tuck myself against the other person’s body and feel their heartbeat and know that I’m safe, for a little while at least. To know that, even though most of the people I know can’t understand what I’m going through, I’m not alone. That the people I love support me. I need people to accept mine and my boyfriend’s quirks; he and I both have NDPH, and his is nowhere near as well-controlled as mine. I need to rant and rave every once in a while, when I’ve had a bad day. I need to not feel guilty for needing help.

    Speaking practically (though the emotional parts are even more important), if I’m having a high-pain day a really gentle shoulder massage is HEAVEN. Friends who randomly give me chocolate or coffee are amazing. Reminders to eat and stay hydrated are greatly appreciated. Naps. Time to meditate. Soft, warm blankets to snuggle in. Hot showers! Cool water on the back of my neck.

    I’m sure there’s other stuff, but that’s the main part I can think of. Wishing everyone a better-than-normal day!

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