What People With Migraine Want Their Friends and Family to Know

Though migraine is one of the top ten most debilitating diseases worldwide, it is often misdiagnosed, under-treated and misunderstood. Those of us who live with this highly stigmatized condition are sometimes hesitant to speak out about the daily challenges we face. But when we talk about our condition and the many ways it impacts our lives, we raise awareness, help others feel less alone and create real change.

Here are 7 things people with migraine want their friends and family to know:

1. Migraine is so much more than just a headache!

It is a complex neurological disease. In addition to often incapacitating head pain, it can include a wide variety of symptoms that vary from person to person. These include but are not limited to:

• Vision and speech disturbances
• Dizziness
• Fatigue
• GI issues
• Sensitivity to lights, sounds and odors
• Brain fog
• Depression and/or anxiety
• Irritability and mood changes
• Tinnitus
• Neck pain

Migraine attacks generally last for 4 to 72 hours if left untreated, but in some situations they can last for weeks or even months. Even if we are not having head pain at the moment, we are likely experiencing one or more of these other debilitating and unpredictable symptoms.

Learn more about migraine symptoms and types of migraine and headache disorders.

2. We want to, but sometimes we just can’t.

We dread having to cancel plans at the last minute. Missing out on work, events, milestones or just ordinary everyday activities hurts. We worry about letting our friends, families and coworkers down, and often feel lonely and isolated. It’s frustrating not to be able to do everything we once could, and there is nothing we want more than to feel well enough to show up for it all! Most of all, though, we still want to be invited to places and events, even knowing that we may not be able to attend.

3. Our pain is real.

For those without migraine, our pain can be difficult to understand. We may put on a happy face and power through, but our pain is still there. The real face of migraine is one of lost time, constant worry, financial hardship, strained relationships and the list goes on. You can check out our “Behind the Mask” initiative, which asks people with migraine to come out from the shadows and share what migraine really looks like.

4. We want to feel better!

There currently is no cure for migraine. While there are more treatment options available than ever before, finding one that both works and is tolerable is a challenging and lengthy process, and it isn’t always successful. Migraine is as unique as we are, so what works for one person may not work at all for another. Home remedies generally don’t work by themselves, and medication is not always a magic bullet either. Finding the right treatment requires a lot of trial and error, and a ton of patience. We often experience intolerable side effects, bad reactions and/or medications that just don’t work for us. For some of us, the financial cost of treatment is completely prohibitive. Know that we want to feel well and are actively working with our doctors to manage our disease, but migraine is a long and tiring journey.

5. We are not lazy.

On the contrary, we are so very strong! Whether our pain is low or high, living with a chronic illness is tiresome, and it requires great strength and incredible energy just to complete daily tasks. If it seems like we need more rest than most, it’s because we do! It’s important for us to know our limits and rest BEFORE we become exhausted, so we can continue to persevere!

6. We’re not rigid, our brains are.

It may seem like we’re just set in our ways. We keep to specific sleep schedules. Avoid certain foods, drinks, scents, etc. We can’t go longer than a few hours without eating and are always tracking how much water we drink. But it’s not us, it’s our overly sensitive migraine brains! We would love to stay out late and catch up with friends, have a cocktail or two, and/or sleep in late. But the migraine brain demands consistency. One step out of line—a night of not enough sleep, a few extra food indulgences, a skipped workout—and we lower our migraine threshold and put ourselves at increased risk of a migraine attack.

7. We appreciate your support.

When you call or text and ask us how we’re doing it means a lot. Even if it can’t stop our pain, your support makes us feel cared for and loved. Having someone who is willing to just listen helps us feel less alone and gives us the strength we need to carry on.

“For an indomitable spirit, the insurmountable is faced every day! We do not give up, we refuse to quit, we purposefully hold on to hope. We are migraine warriors!”  —Shoshana Lipson

We want to know:

How do you explain migraine to your friends and family? Is there anything else you would add to this list?