Tea for two
Today’s prompt: If I could invite someone to my home for tea for the purpose of explaining Migraine disease to them so they would truly understand, who would it be and why?
This one is so difficult to answer that I almost skipped it for the day. Would it be a family member, a co-worker or former boss, a friend, a stranger, or a public figure? Here’s the rub: in order for someone to truly understand Migraine disease would require that they take action. Getting someone to change their behavior is…well…impossible unless they want to change. The person I would invite would need to be someone who was so moved by their new understanding that they were compelled to do something in response.
So I will invite YOU for a virtual tea. This is what I want you to understand about Migraine disease:
- It is a genetic, neurological disorder of unknown cause and there is no cure. In fact, there are only a few treatments specifically designed to treat the disorder.
- By the time you hear about a “new” treatment on the news, Internet, or through the rumor mill it is likely that Migraine patients and doctors have been using it for months or even years. This is why the statement “Have you tried…..?” is often poorly received by their loved ones with the disease. We know you mean well, we just have so little energy to begin with that we don’t want to waste it explaining over and over again why the “latest and greatest” failed for us months ago.
- Your loved ones with Migraine disease want desperately to join in the fun for every celebration, party, holiday, and get-together. We will often come to family events even when we should be in bed just because we don’t want to miss out on life. We are often mislabeled as pessimists because of our frequent pain.
- The attacks can last anywhere from 24 to 72 hours on average. Some go on for days despite treatment.; When we ask for help with our symptoms we are often told by doctors that we are “drug seeking”, need to “relax more”, or referred for mental health treatment. It is getting better for some of us. There are now Headache & Migraine Specialist available in some cities who can offer effective treatments. The problem is access. There are far more patients in need of care than there are specialists trained to treat us.
- This is an isolating, lonely disease, particularly for those of us with Chronic Migraine (15 or more days of pain each month). Attacks sometimes prevent us from getting out, forcing us to retreat to the darkness of a bed or couch. At other times we fear getting out because our family and friends do not understand our need to avoid triggers. Most of us must avoid all forms of perfume (including your scented candles and air fresheners), artificial sweeteners, food additives, cheese, wine, processed meats, foods containing tyramine (like bananas). We are also vulnerable to attack from bright sunlight, flourescent lights, loud noises, flashing lights, and thunderstorms.
- Despite our frequent attacks, most of us continue to work full time jobs. These jobs may not always accommodate our need for a trigger-free environment even though they are required to do so by federal law. Many of us keep our diagnosis a secret from our employers for fear of being viewed as “unreliable” and putting our job at risk. It is common for us to have weekend-long attacks, only to recover just in time to return to work on Monday morning.
- This means that housework and time with our families suffer. Please don’t be critical of our messy house, piles of dishes, or laundry. We would gladly clean it if only our heads did not pound hard enough to blind us and send us reeling to the floor.
- When not experiencing an attack, we can often look and sound great. The dirty secret in “Migraine world” is that we often look and sound great in the throes of agony, too. This disease is so stigmatizing that most of us have developed the skills to fake it until we are so bad off a trip to the ER is required. We just don’t want people fussing over us because of the disease. We want to just love you and have some fun. Between attacks we are productive social people. Perhaps you have seen this side of us? Most likely it is only this side that you have seen. We let very few people into our “Migraine world” out of fear of harsh judgement.
Still want to help your Migraine friend? Call her up. Offer to come over for a visit. Let her know you’d like to be a part of her world. Offer to help and don’t be surprised when she politely refuses. Keep offering. She will eventually accept your offer if it is sincere. Do not shy away if she is in pain. Ask what you can do to help.
Thank you for stopping by. I hope you now have a better understanding of Migraine disease. Please use this understanding to challenge stigmatizing statements wherever you encounter them. Love your Migraine friends and family by reaching out to them. I know they are lonely and miss you.
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.