Just believe us.

Just believe us.

I wrote this series of mini-letters this morning after thinking a lot about how important it is that we, as humans, believe each other’s experiences.  Even if you approach others’ stories with a critical eye, responding in an outright critical or non-believing way simply shuts down the communication between you.  Are you sure that the person is wrong?  Let him speak anyway. Have you never heard of a particular side effect of migraine that this person is describing? Take your time to hear what a migraine is like for her without judging her a liar or hypochondriac.

Dear families, friends, doctors, fellow patients, caregivers, teachers, bosses, co-workers, neighbors, employees, hospitality staff, flight attendants, taxi drivers, professors, classmates, grocery store clerks, cashiers, neurologists, ER doctors, hospital nurses, and more:

When I tell you something about my health, please believe me.

If I tell you that I have had hugely swollen lymph nodes since beginning a new course of treatment for migraine prevention, believe that that is the connection I’ve made, and look into it.  Trust that I believe what I’m saying, and look into it patiently and with a critical eye, trying to figure out if there is indeed a connection between the drug and my lymph nodes.  Do not simply wave your hand in dismissal and say, “Well, I’ve never heard of that and it’s not on the list of side effects.”

Co-workers, when I tell you that the fluorescent lights in the board room trigger a migraine for me and that there’s a reason why I went out of pocket to buy incandescent lamps so we could meet as a team without being in utter darkness, believe me.  

Hotel management, when I tell you that whatever cleaning chemicals the housekeeping staff used to clean our hotel room have a smell too harsh for my migraine brain, don’t tell me that it’s not as bad as I think it is and that I’ll “get used to it.” When I tell you that one hour of having the air “cleaned” by some sort of air filter is not going to help, believe that I am telling the truth and help me find a room to stay in that won’t literally make me sick.

ER nurses, when I tell you that my migraine pain isn’t that severe, it’s just that I am well-educated about migraine and am at the hospital for fear of status migrainous since I’ve had the same migraine for over 72 hours, don’t try to shove morphine down my throat (or into my arm via the IV). Please believe me that I don’t need pain meds.  Also: why are serious painkillers thrust upon me when I don’t need them, but in times that I could really use them, I am treated like a drug-seeker?

Flight attendants, please let me switch to an empty seat when I try to confidentially tell you under my breath that the cologne my row-mate is wearing is intolerably bad for me and that, due to health reasons, I can’t sit next to him.  I see that there are empty seats in the back and I’ll happily move there. Please let me do so—I’m not trying to get one by you, I’m just trying to keep this migraine, which is already on its way, from getting too severe.

What would you like to say to the doubting presence(s) in your life?  Who should be on your team but isn’t? What experiences did these [mostly fictitious] mini-letters remind you of from your own life?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • skipper
    2 months ago

    Just wanted to say I like this article. We are raised to tell the truth, to work hard and pull our weight. Just to keep up with “normal” people, we have to invest ALL of our energy. Every single day feels like a severe crisis day. When others are enjoying their free time, we are at home crashing. But doctors and society treat us like malingerers, liars, and cheats. WTF is wrong with this picture??? It’s criminal. WE NEED ADVOCACY, like they’ve done with breast cancer awareness.

  • Kathrine
    2 years ago

    My psych appointment recently was on a ‘bad head’ day, so my partner who was with me asked if we could dim the lights. The lights however didn’t dim, they only went out. My therapist offered to work in the dark – which I thought was really nice of him given that his eyes weren’t as accustomed to the dark, as mine were. Only thing was he needed to read and write notes, so out came the torch on his phone, another bright light! – oh well I did give him points for trying.

  • mountainiris
    3 years ago

    I was fairly fortunate when working and we had dimmers on the lights in the conference rooms, so I would always politely ask my coworkers if I could dim the lights and most were agreeable. I wasn’t so lucky in our shared open working space all of the time though if it was a fully staffed day.

    What gripes me most though, is why on earth that all of the neurologist offices I have been to over the years still have bright fluorescent lights in their waiting and examining rooms?! Wouldn’t this be a place that they KNOW to have less intrusive and bothersome lighting for migraine patients??

  • The Migraine Girl moderator author
    3 years ago

    I hear you, mountaineers! Last time I had a neurology appointment, my neurologist was worried when she walked into the exam room and the lights were out. “No,” I assured her, “I feel okay today–I just don’t want to have fluorescents on unless necessary.” She was relieved and then commented that it’s a little silly that the architects and designers who make doctor offices don’t ever consult with (or care about the opinions of) the doctors and their patients when they make decisions about environmental factors like lights.

    I used to go to one of the foremost migraine specialists in the country and his waiting room and exam rooms blared with overhead, buzzing fluorescents. That was just one sign of many that his office wasn’t very sensitive to the migraine brain, I’m afraid.

    Perhaps if we all speak up more often, eventually the designers and doctors will take heed! (Or not..)

    -Janet G.

  • 3 years ago

    Very well said, and definitely believed.

  • The Migraine Girl moderator author
    3 years ago

    Thank you, Leigh!

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