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20 Things People With Migraine Want You to Learn During Migraine Awareness Week

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This week is Migraine Awareness Week, so it’s especially important during this time to raise awareness, correct common misconceptions and promote empathy and understanding of those who live with migraine. Although a migraine is sometimes mistaken for “a bad headache,” it is actually a neurological condition that can manifest in various forms (hemiplegic, vestibular, with/without aura, retinal, etc.) and cause a number of symptoms throughout the entire body. Everyone experiences migraine differently, but this does not mean one person’s migraines are “better” or “worse” than another’s. Every migraineur is a warrior deserving of respect and compassion.

To help others better understand what life as a migraineur is like, we asked those in our Mighty community who have migraine to share what they want others to know during this year’s Migraine Awareness Week. Let’s shed some light on the realities of battling this disease.

Here’s what the community shared with us:

1. “There’s so much more to a migraine than the pain. It’s overwhelming nausea, extreme sensitivity to light, sound and smell and constant fatigue. For those of us with chronic, intractable migraine, there is no relief. We just endure.” – Claire H.

2. “I wish people knew migraines can and do last for days at a time. I am not making it up that my head is pounding, heavy and light of any kind hurts. I don’t need doubts of how bad it hurts or questions of why I won’t drive anywhere.” – Megan M.

3. “It took me more than 40 years to understand that my migraines are a neurological disease. I can minimize symptoms and flares, but I can’t cure or control the disease.” – Ramona R.

4. “My migraines are unpredictable, so I’m scared to make plans because I might have to cancel or push myself through doing something with you through a migraine and make myself worse.” – Courtney J.

5. “I wish people would know I can’t help it. Despite a good and healthy life, despite heavy medication, migraines have the ability to start at any given time. So no, I can’t ‘make an effort this time.’ I have to take care of myself first, even if it’s not the right moment for the others.” – Aude V.

6. “Please stop recommending something that worked for your best friend’s neighbor’s sister’s dog walker (or some other convoluted relation). I’ve tried meditation, I’ve tried acupuncture, the herbs, the vitamins, the minerals, the piercings, I’ve tried all of it. The person whose name has an MD or DO after it and I have decided the best course of treatment for me. Please respect that and realize sometimes the internet is wrong!” – Samantha S.

7. “I wish people would understand that the prodrome and postdrome phases can be just as debilitating as the actual head pain and other physical symptoms you experience during the migraine. It’s a series of events, not a specific moment.” – Amanda K.

8. “Some of us can still function through a migraine attack… but that doesn’t mean we aren’t [struggling] greatly.” – Gina F.

9. “I have co-existing migraines and tension headaches. While 90 percent of the time I only get tension headaches, that doesn’t mean the 10 percent of the time they turn into migraines are any less painful than someone who experiences more chronic migraines. It’s not a competition and we can empathize with each other with out turning it into some twisted game of ‘my pain is worse than yours so yours doesn’t matter.’” – Fae R.

10. “Migraines change. A migraine I had last week might be completely different this week.” – Barbara H. B.

11. “[I wish people wouldn’t] compare their migraine to mine. Symptoms and intensity are different and just because you could continue to go about your day doesn’t mean I can. Likewise, don’t tell me mine are still bad because I haven’t tried x, y or z. Leave it to me and my doctors to determine the best treatment course. Do show compassion and have patience with a [migraineur].” – Shira J.

12. “Please don’t tell me ‘I get headaches too.’ While I appreciate your attempt to find common ground, a migraine is not just a headache. Until you’ve had one, you cannot fathom the difference.” – Danielle S.

13. “Ask the person with the migraine how you can help them. Each person responds differently. I love to have my back rubbed but others hate to be touched. So be aware that it may be different person to person and also migraine to migraine.” – Stacey L. K.

14. “A migraine isn’t just a headache. I’ve even had doctors downplay the severity of my disabling migraines. Migraines have placed me in the hospital for treatments. It is a real problem that needs to be treated as real.” – Ashley C.

15. “If I’ve got a migraine and can only grunt and moan when you try to take care of me by rubbing my back, bringing me water, tucking me into bed or something else… please don’t be offended! Know I greatly appreciate that you care, even if I’m pushing your efforts away. During a migraine, any sensory input can dramatically worsen the pain and/or nausea, so that arm rub you offer in consolation might actually make me have to fight hard not to vomit on the spot, and I may not be able to audibly utter a ‘please don’t touch me’ without the sound of my own voice having the same effect. Touch of skin, blankets, water to lips, etc. might be a problem, on top of the better-known sounds, light and smells. Just try to take cues from the [migraineur] as best as you can, and please know you are appreciated, regardless of how unable to express that appreciation we might be in the moment.” – Janessa C.

16. “I want people to know migraines have phases to them. After the migraine, we can be fatigued and experience confusion and memory issues. Just because the pain has stopped, it doesn’t mean we are fine. Lastly, no one wants a migraine. It’s never an excuse.” – Sherry B.

17. “During a migraine I just want peace, quiet and darkness.” – Carmel M.

18. “It is all-consuming. You can’t read, watch or listen to anything. You must merely exist until it goes away.” – Lisa A.

19. “I wish that my friends and acquaintances knew I really do want to be invited to join in, even when I can’t come.” – Katie P.

20. “[I need] respect, patience and consideration. Respect that you believe the pain migraineurs are challenged with, even daily, like me. Patience for those who need extra time when communicating a thought and for not being as reliable in life any longer. And consideration that a migraineur is trying desperately to adjust to the limitations brought on by pain, and how it affects every aspect of her life.” – Gretchen W.

Originally published: September 6, 2017
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