We Need to Change the Way We Talk to People With Debilitating Headaches

When was the last time you saw a headache? What does a headache sound like? When you touch someone with a headache, what does it feel like?

We can’t see headaches. We cannot hear headaches. We cannot feel someone else’s headache. It is time to use a different guide to talk to those with debilitating headaches.

We have a need in our society, and perhaps as humans in general, to assess things through our senses and account for that feedback as being real.

My mother had just undergone three rounds of radiation, having just been given a terminal diagnosis of lung cancer and brain tumors, and she looked just fine. When she gained weight from being on steroids, the comments came: “You’re gaining weight, that must be a good sign.”

What you see is not always what you get!

I can give you any number of examples that belie our need to rely on our senses to bring meaning to the world. One has just to think back on history to realize bad things do not always look bad. Charming people can do bad things. A beautiful day can bring calamity. Accidents happen under the very best of circumstances. Storms are silent before they hit.

Those of us dealing with debilitating headache pain cannot usually go out and about on a particularly bad day. On days when I am sick, vomiting, dizzy, and in terrible pain, I am at home, laying flat, counting my moments in seconds, and recalling any loving memory I can, so as not to cry (because it hurts so much more when I cry).  This is not the day you will see me at the supermarket. I won’t be going out that day.

The day you do see me out and about will entail something much like the following: drink three cups of coffee plus one espresso, rush into the shower, take meds if I can to help reduce pain and increase my upright time, pull myself into a full-body shape-wear (hilarious, I admit, but a serious struggle these days), and get directly into the car where I have the seat tilted way back. I can get about four hours of manageable
upright time by doing this… so long as I have nothing to do for the next couple of days or so. The pain starts to reemerge after about two hours, but I can make it longer.

By the time I get home, I am in terrible pain. I don’t want to take the shape-wear off as it will be so much worse, but I can’t sleep with it on. I struggle out of it, into my pajamas and back into bed… for three days.

Please don’t tell me, “Well, you look good.” It just makes me feel lonely… like I have to take someone else off my list of advocates. Like I have to keep another person at arm’s length. I know you don’t mean to hurt me, but I don’t have enough energy to explain.

“What do you need to hear?” you ask.

I’m so glad you did!

1. You already know I’m not well, so ask, “How are you doing lately?” When I say “I’m OK,” know it is the only acceptable way for me to answer. I cannot bring myself to say, “I feel fine” or “Good,” so I say OK to test the waters. Give me time to talk about what is going on with me right now and then we can move on in the conversation. I do want to hear about your daughter, and your pets, and your work struggles. I just really am not actually doing as well as I may look like I’m doing.

2. “When do you see your doctor next?” Knowing you want to keep mental track of what’s happening with me makes me feel like I have a mental advocate in my corner. Even if you have no idea about my procedures, it makes a difference to me knowing you are “with me” in the treatment room.

3. “When can I come to visit?” It is so lonely being isolated from everyday life.  Most of us lament that we have to do the shopping, run errands, work full-time, and take on other commitments, but for anyone with chronic illness, especially those with spinal CSF leaks, life is stagnant. Many of us have to lay flat in bed or maybe can rest in bed at an incline. Anyone confined to their bed is looking at four walls all day long. We are social animals, humans, and we need interaction. Please visit if you say you will. It means an hour or two for you when you are already very busy, but it could be the only visit for an entire week (or longer) for someone with a chronic illness.

4. “When is the best time for me to call?” I know and understand that you are really busy. Believe me, I really appreciate anyone coming to see me or even taking the time to stop and talk in the supermarket. Calling me is really a fantastic alternative.

I am usually up around 6 a.m. (although sometimes when I am up in the middle of the night I end up waking about 8 a.m.). I stay up until around 10 p.m. mostly due to the fact that I have to tire out my headache pain enough to be able to fall asleep. So, I am up for a minimum of 14 hours a day, usually 16. Suffice to say, checking Facebook and reading emails takes care of about one of those hours, so I have plenty of time to talk on the phone. Talking on the phone can actually be easier for me. I don’t have to sit upright, I can talk whenever you’re free, my eyes get a break as I can close them while I talk, and I can control the sound coming in by having the phone farther away from my ears which are highly sensitive.

These last two questions are very important. I learned early on that a person who is sick does not need the extra burden of letting you know when to visit or what to do.  Ask specific questions, and I can guarantee you will get an answer. If you say, “Let me know if you need anything,” you are really just applying an old standard pleasantry to an otherwise exceptional circumstance. Be specific. If you want to help then say what you will do: “I can bring dinner.” “I would like to make you something you can eat.” “I want to bring you fresh homemade soup.” “I have a CD of meditation music t I made for you.”

If you want to visit, ask for a date and time. If you want to call, text and find out if I’m free. If you just want me to know you’re thinking of me, write the email and send the text message.

I am here… at home, in pain, and I really do want to know that you are thinking about me. But you know what? You don’t look like you’re thinking about me! (wink)

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Thinkstock photo by kertlis