Negotiating a truce

I responded to today’s challenge prompt at Then I got to reading more about Haruki Murakami and discovered another quote that prompted a different thought regarding migraine and headache disorders.

Each person feels the pain in his own way, each has his own scars.

Everyone in the migraine and headache disorders community knows agony. We’ve all dealt with more pain and suffering than the average person. Some of us get hit a few times each year while others never get a break.  Some experience a range of intensity from mild to severe while others struggle with constant severe pain.  Our diagnoses include: migraine, cluster headache, cervicogenic headache, tension-type headache, new daily persistent headache, chronic daily headache, post-concussive syndrome…and dozens more.  We experience a wide variety of comorbid conditions: depression, cardiovascular disease, high blood pressure, sleep apnea, fibromyalgia, pseudotumor cerebri, chiari malformation, anxiety, PTSD, diabetes, and much more.

There are hundreds of support groups and awareness groups available to choose from. Each one is competing for visibility and members, yet we can’t all join every single group. We must choose.

Group leaders must ask themselves,

Are we promoting unity? Are we furthering the cause of headache disorder awareness and helping to reduce stigma or are we creating unnecessary conflict within the headache disorders community?

If we are to accomplish anything worthwhile from our efforts, we must be united. Here are a few ways we can make that happen:

  1. Incorporate the official awareness color, PURPLE into each organization’s color scheme, logo, and awareness ribbon.
  2. Adopt the purple awareness ribbon or incorporate purple into your existing ribbon or logo rather than trying to “reinvent the wheel”.
  3. Promote our common experiences as it relates to limited treatment options, stigma, poor funding, etc.
  4. Resist the temptation to qualitatively compare individual experiences (i.e. “my pain is worse than yours”).
  5. Resist the temptation to question the truthfulness of another patient’s experience (i.e. “that person must not have ever experienced a real migraine”).
  6. Resist the temptation to engage in patient blaming (i.e. “if she would just try this treatment”).
  7. Support each other’s efforts to create awareness and reduce stigma by “liking” and “sharing” status updates, wearing purple, link sharing (if you have a website), and purchasing each other’s awareness items.
  8. Donate to the 36 Million Migraine Campaign for research.

If you lead any type of non-commercial headache disorders awareness group (Facebook, Yahoo, Google, LinkedIn, offline, etc.), please post a link to your organization in the comments section below.

The 2014 Migraine and Headache Awareness Month, is dedicated to Dreaming of a World without Migraine and Headache Disorders. The 2014 Migraine and Headache Awareness Month Blog Challenge is a project of American Headache & Migraine Association.

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