“She Never Feels Well”

This week I was supposed visit my sister and her family, who live three hours away. With how bad my headaches have been the past couple weeks, I decided it was better to stay at home.

Last night I called to tell my sister I wasn’t coming and heard my nine-year-old niece ask why. To my sister’s response that I didn’t feel well, my niece said, exasperated, “She never feels well.” All I could say was, “Yep, she’s right” and apologize for canceling my trip.

How do I explain to a nine-year-old (and her 11-year-old sister and 7-year old brother) that the headaches I get when I visit them are with me every minute of every day?


How Headache Affects Families

The National Headache Foundation has announced the results of their online survey to better understand how headaches affect a sufferer’s family and what role heredity plays in headache. Findings include:

  • 66% of sufferers have a family history of headache; in 63% of the cases it is the mother that has headache
  • 53% of respondents said that their families do not understand their headache condition
  • 63% of sufferers said that when they have a headache they are unable to attend to household chores such as cleaning, grocery shopping and cooking
  • 79% of family members have to cooking meals and 61% having to handle household cleaning during these periods
  • 63% of spouses or significant others take on extra household and child-rearing responsibilities during a sufferer’s headache
  • 68% of people with headache feel that their spouse or significant other support them when they have a headache
  • 83% of respondents feel guilty about not being able to spend time with their families
  • 66% state that they believe their families feel neglected when they have their headache attacks
  • 50% of headache sufferers feel that their spouse or significant other does not understand their headache issues and needs

From these findings and talking with other people with headache, it is clear that chronic pain can strain even the happiest of relationships. Learning to live with chronic pain can be frustrating, exhausting, exasperating and heartbreaking, for patients as well as their relational partners and families.

Coincidentally, I posted a review of Chronic Pain and the Family on Blogcritics yesterday. The book explores the issues facing couples (as well as children and extended family) who have to deal with one person’s illness. The author offers suggestions for each person in the couple to repair the relationship and shares many additional sources to help couples and families. She also explains the debility associated with chronic pain and the havoc it wreaks on people in pain.

An excerpt from the book is available from the publisher, Harvard University Press.


Unhelpful Advice

On one of the headache forums I read, a member I’ll call Jane posted that a family member told her that Jane causes her migraines from the guilt she has about conflict in her life and fear. Receiving daft unsolicited advice is one of the side effects of illness that most doctors don’t warn you about.

Those who give advice, whether it is legit or absurd, are probably truly trying to help. It is hard to see someone suffer so much and not be able to fix the problem. Unfortunately, the advice often comes off as judgment, implying (or saying straight out) that we bring on our pain ourselves. How many with migraine haven’t wondered if this is in fact the case? We don’t need someone else to doubt us; we do that plenty on our own.

I rarely stand up for myself in situations like Jane’s. It just doesn’t seem worth the energy. But if my current outrage is any indication, I’m harboring much resentment about such advice. I need to speak up.

How will I tell misguided advisers thanks, but no thanks? There’s the polite: “Hmm, that’s an interesting idea.” Or the oh-so-nice and passive-aggressive approach: “Thanks for your concern, but I have a complex neurological disease that can’t be cured with platitudes.” I’m partial to: “Buzz off” (perhaps replacing “buzz” with a stronger word).

My response will depend on the person giving the advice and if I think it is offered out of kindness. How fed up I am that particular day will surely be a factor too.