Throw the Migraine Advocate off the Plane?

Have you ever worried that medical supplies and equipment for your Migraine or other health issues might cause a problem going through security at an airport? Think you’re safe once you’ve made it through the TSA gauntlet that leads to your gate and the illusion of safety?

That wasn’t my experience flying in June.

As a passenger and the purchaser of airline tickets and seats, we realize there are certain rules and responsibilities that must be followed by both the carrier (airline company) and the passengers. There are rules, and there are laws. A good passenger will login and get the latest and greatest information on their chosen airline’s website just to be sure they won’t have any problems. (Check!) There is so much stress involved in flying these days, that even a few moments could ruin your entire trip.

So, what do you do when you find yourself confronted with multiple airline personnel who insist on taking your carry-on bag filled with medicines, medical equipment and medical supplies, away from you as you stand ready to step your first foot onto the plane?

This is my shocking cautionary tale…

If you’re me and alone, the first thing I do is cheerfully let them know I understand my responsibilities and the rules as well as their responsibilities and rules. I also know what the law states re: medical necessities and I’m prepared. I stand up for myself, with a firm and steady smile, even in the midst of a Migraine attack. If you are a regular part of my audience, you know I am also always, always polite.

In this case, the flight I was on ended up being a smaller plane called a CRJ900 (9E). This means their overhead capacity is also smaller, and at a premium. Before boarding, personnel walked through the gate area and gave out special luggage tags to nearly everyone, informing them there would be no room for carry-ons that weren’t extremely small. Translated, this meant that it didn’t matter if your bag was within the airline’s guidelines. If it caught their eye, it couldn’t go. There would be no charge, but basically anything with wheels ended up confiscated and checked and put below with the rest of the luggage.

For a person with more than one ongoing and unpredictable medical condition (not to mention a current and nasty Migraine attack in progress), this is a scary prospect. So, I not only explained my situation to the person who tried to give me a luggage tag and told me to check my under-sized and approved carry-on (check!), but I also went up to the desk to talk with the gentleman there who seemed extremely nice and very understanding.  I wanted to be sure there would be no problems and everything would go as smooth as possible. He assured me that he had promised over the loudspeaker that everything would work out just fine, and he meant it. He was there to make sure my flight went well.

When I told him I could not be without the medical provisions that filled my bag, he was kind. He checked the manifest and informed me that the plane was not full. If I was willing to give up my great aisle seat (for which I’d purchased an earlier ticket to get) and move to a less desirable seat in the very back of the plane, I would be assured to have the room I needed for my bag, but also a (hopefully) quiet row all to myself where I could be miserable with my Migraine in peace. Being Migrainey next to the smell of the restroom didn’t sound like fun to me, but you could tell he really wanted to be helpful, and I was so very grateful at the thought I might even get the chance to lay down during the flight.

God bless this man, because from this point on, things got very, very ugly.

I sat at the gate and had a conversation with another visibly shaken lady, who it turned out hadn’t flown in years. I explained the procedure with a smile, made cheery small-talk and told her, “This is so easy, there’s no reason to stress at all. The next thing you know, you’ll be at your destination!”

We were the last two persons to give up our tickets. I stayed with the lady and made more small talk, hoping to ease her mind and take away some of that stress she’d talked about. As a medical first responder, I am often the person there who takes a patient’s hand and talks to them to get their mind away from their fright.

After explaining myself, in detail, again, to the (different) person who took my ticket, I made my way to the plane. I received a lecture for which I felt inappropriate shame, and as I walked, tried to talk myself out of feeling badly about something over which I had no control. I was looking forward to an amazing time in Boston!

When I got to the plane, literally ready to put my foot in the door, I was confronted by a woman who physically tried to take my carry-on, making it crystal clear that there was no way I was getting on the plane with it. She was joined by several other personnel who confronted me, reaching for my bag, separating me from the nervous lady who just wanted to get on board and fly without any problems. She stood there looking horrified.

I once again explained to personnel what was in my bag, and that I needed it for my flight. The woman became visibly agitated, and loud and told me to empty it and put it all in my computer bag. I said “I’m sorry, I wish I could.” I explained that, had that been possible, I wouldn’t be carrying a computer bag and a carry on in the first place. My carry-on was full as was my computer bag, but since I had flown many times with these in the past, I knew from experience either one would fit under the seat in front of me.

A lecture/argument ensued.

Finally one of the many personnel surrounding me noticed the shell-shocked lady behind me and let her board. I never saw her again.

The stewards of the plane began to take notice and listened as I repeatedly explained that I knew from experience that my bag would fit under the seat, I had an entire row to myself so I could be sick in peace, and I just needed to get on the plane so I could get myself situated before I became more ill. I promised if it didn’t fit, I would talk to a steward about it and we’d figure something out.

Minutes ticked by as the lecture continued.

The argumentative woman with the vest, puffed up, got louder, looked at her watch and with a serious attitude said “You’re telling me there’s no way you can do without this stuff for this short flight?” and I replied, “Ma’am, I really wish I could. Believe me, I wouldn’t have this with me if I didn’t need it. I’m very sorry I’m a problem. I followed all the rules. I did everything your airline and the law says I am supposed to do to carry my medical necessities on board. I really need to get to my destination, and I know from experience my items will fit. Can you promise me I’m not going to get stuck again on the tarmack for an additional hour and a half?”

She ordered me to take my meds now, before I board, and they’d put it all below. She offered water if I needed it.

I started to cry at the demoralization of having to take my medicine in ways other than in-my-mouth-and-with-a-swig-of-water like most people, and briefly considered explaining that to her and the entire crew in detail, knowing they would be embarrassed. But thanks to the dryness of my Sjogren’s syndrome, no tears escaped my glasses and I bucked it up instead. I replied that wasn’t possible in this particular instance, or I would be truly happy to do so.

I just couldn’t make myself feel even worse. Not to them. Not today. Not like this. It didn’t matter anyway.

She became even angrier, and if looks could kill, I would have vanished at that moment with a giant puff of smoke and large, hot red flames coming from my hair. She got even louder still (she’s up to yelling at this point, each word cutting through my Migrainey brain like a knife.) I looked around at all the other official personnel standing around me, expecting at least one of them to put a hand on her shoulder, or somehow intervene or at least look apologetic. I couldn’t believe what I was experiencing.

Then, the worst thing I could imagine happened.

I’m saying this as nice as I know how, because I know everybody has a bad day every now and again (I sure know my day wasn’t starting out too well).  The argumentative, loud woman with the vest kicked out her hip, pointed her finger and told me I had a choice. Check the carry-on bag and put it below, or I wasn’t getting on the plane. “Period. That’s your choice.”

I was headed to International Headache Congress in Boston. This was important and vital, not only for me, but for all my patients who were counting on me. I was alone, and sick, and getting sicker by the moment. If I didn’t make this flight, I had no idea what I’d do. But I had no idea what I’d do without access to my medical supplies. I had to get on this flight and decided I was willing to take the issue as far as I had to, because the only thing that equaled my need to get on the plane, was my need for my medical supplies.

But I was also Migraining. Every time she yelled at me cut through my head like a samurai sword, and I tried hard not to flinch. I also have some other serious health issues that require all – not just some – of my meds and supplies (including items like the neck pillow and special seat I needed for my back) in that bag. What was I to do?

I was dumbfounded, figuring out what to do next, when a stewardess who’d been witnessing the incident stepped out of the plane and addressed the angry woman saying “Why don’t we just let her try. There’s no harm in that is there? The plane’s not even full.”

There was a pause in the woman and I looked at the stewardess with tears she couldn’t see behind my glasses, and said “Thank you so much. I’m so sorry to be such a problem.” I stepped on before the angry woman with the vest could stop me.

What was I doing apologizing for following the rules, and for being sick? I felt belittled, shamed, demoralized that I was so sick I needed a suitcase just for my medical supplies. I argued with myself that I didn’t deserve a seat on the plane. But, at the same time, I really didn’t care. All I wanted was to collapse on my seat with all my “sick stuff” and pray not to vomit.

I got to the back of the plane, where another stewardess stood. She immediately told me I needed to check my carry-on. “It has wheels, so it’s not going to fit.”

Again with the explanation.

“And I’m feeling horribly sick right now. I really need to get into my seat. It’ll fit, I swear.” The stewardess immediately asked me one question – was I contagious? My answer was “I wish. I’d be feeling better than I am right now if that was the case.”

Then it hit me…. so, that’s what all the fuss was about – the wheels? Well, my bag was soft sided and smooshy. It took me less than 5 seconds to get it safely under the seat in front of me despite the fact there was so much room in the overhead that turning it sideways and putting it there would have been simpler.

Thankfully the ride to my first lay-over was smooth. The stewardess who let me onto the plane apologized with a shake of her head, and I was on to the continuation of my flight…

…Where again I had an unbelievable, demoralizing fight on my hands.

To be continued… Conversation with an Airline, and Learning I Have a Record

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 (31)
  • Toni Chavez
    5 years ago

    I hate that this can even happen! I’ve had a few situations, but nothing this crazy awful! I’m very sorry for the way you were treated. There’s so many scenarios that run through my head as to what would I do had I been the one in this situation, but I don’t think anyone can really know unless it happens to them. I do have to admit I have been watching out and looking for the continuation of this story, though I am afraid things didn’t get better for you on this trip. Just have to say I love your articles!

  • Laurie Vincent
    5 years ago

    That is so horrible! Did you send a formal complaint in to the Airline Company’s CEO yet? Could your Doctor write you up a paper with Doctor’s orders to carry that bag with you at all times? I can’t believe they did not understand. It’s just like telling a diabetic patient that they cannot have any insulin with them in case of an emergency. If that had happened to me I would have put the entire story on 60 Minutes, 20/20 and 48 Hours.

  • BethBlue
    5 years ago

    Ellen, your story is horrifying and sad. I’m terrified to fly for the same reasons you’ve just outlined in your story. The policies must change NOW, and not just for us — there are other disabled people out there suffering just as we do. I have elderly parents who live eleven hours away — what choice do I have?

  • Newdancerco
    5 years ago

    This makes me ill just to read it. I’d have outed the airline as a warning to others (and payback, I’m a bit vindictive at times), so I admire your restraint.
    I’ve been chronic since high school, so I don’t remember airline travel without migraines. I detest the gate check trick, and try to pack my meds in my computer bag as much as possible. Now that they are checking gate checked bags through to your final destination, I have nightmares about it getting lost with all of my meds!
    Given that others have had similar experiences, it could in theory become a class action suit. I’m not usually a “sue them” type, but there are limits.
    Also, I wonder if anyone has contacted the airline and connected the numerous complaints to a need for training, then OFFERED IT. I wouldn’t know where to start to find such a thing as a trainer, but as a migraineur, I’d be happy to link up with a few others to create a training and give it to the new airline attendants or at an annual training, perhaps. Talk about a way to positively impact the lives of not just our fellow migraineurs, but everyone travelling with a medical issue!
    I wouldn’t hold my breath on getting TSA to take it, but if they did, wouldn’t that be awesome- having them treating us as humans, too?

  • Laurie Vincent
    5 years ago

    Great ideas! Some people just don’t understand Migraines and all of the other severe symptoms that some people get. They are ignorant in thinking – oh it’s “just” a headache.

  • anita.a
    5 years ago

    Ellen, no need to apologize, its not your burden:) We,as expearienced fliers KNOW the truth.Heck, I have friends who are pilots.Worked for the airlines myself back in the day.I think perhaps this happens to folks like us so we can alert others who would be distroyed by it if they faced it unprepared. And by voicing the ills it helps others,and even us sometimes, fight it.

  • Ellen Schnakenberg author
    5 years ago

    anita.a,

    That’s actually a brilliant way to look at it. As I prepare to fly again in approximately a month, I’ll be concentrating on looking at it like that 😀

    ~Ellen

  • anita.a
    5 years ago

    I know exactly which carrier this was. They did the same to us several times. You can confirm w/ the airlines all you like but those monsters still do this. Complaints to corporate only get you points or a money off voucher. Nothing else. Not even sorry. Depressurization can trigger a fatal migraine in me so I must have my meds ( luckily a clutch sized emergency bag) the first time, my purse had to be in the overhead and they wanted my husband to sit elsewhere. If I went down I needed him to get my stuff and help me take it. We were assigned those seats but had to pay extra at the gate or be seperated.The next time, having cleared it for all the connecting flights, I told EVERYONE that dr.s orders I had to be alerted 30 min before landing procedures begin so I could take my meds. I repeatedly explained why and how serious it was. Again, they all claimed it was understood and they would help. So all buckled up and about to begin taxing the head stewards trots up to us and asks if I am the lady with the medical condition. I tell her yes and reiterate I must take the meds 30 min before landing procedure begins. She just gives me this exasperated sigh,rearing back to scowl and says loudly, well we’ll be in the middle of service and its just to busy so we can’t help you. I tried again explaining what it could do to me and she just flapped her hands stepping back and saying the didn’t have time. My husband growled ‘do you think you can at least get her water then?’ And she said oh sure, we can leave a bottle with you when the cart comes around. LOVELY airline. After that, we just take an extra day and drive. Your not alone Ellen, they dis us all.

  • Ellen Schnakenberg author
    5 years ago

    I’m so sorry you’ve had this experience too. The thing is, I’ve been treated so well by some airlines, that I know it’s possible to be nice. We don’t have to put up with disrespect.

    I wish I could drive. These trips simply aren’t an option or I would drive. I often do drive, or have hubs take me. Lately I’ve not been able to drive myself much anymore. Another blow to this chronic Migraineur.

    Thank you so much for the support. It means soooo much <3

    ~Ellen

  • Ann B
    5 years ago

    That is just too awful for words, Ellen! You should definitely file a complaint. The attendant was rude and very unkind. You were being conscientious and polite (as we all have to be as we don’t want to get thrown off a flight). “I received a lecture for which I felt inappropriate shame, and as I walked, tried to talk myself out of feeling badly about something over which I had no control.” A similar thing happened to me on a flight to see my first grandchild born (I didn’t make it). Like you, I have multiple problems in addition to migraine, one of them is that I only have 1/3 hearing. I explained this to the attendant at the desk as I was flying standby and was afraid I wouldn’t hear her call my name (who can hear over those terrible speakers, anyhow?). She indicated understanding this so I stood near the desk rather than taking a seat. I don’t know if she forgot my explanation or just got busy and rattled, but in the end screamed at me to take a seat or be escorted out of the airport. I took a seat but burst out in tears, well aware that everyone in the area was watching me. It was humiliating to say the least, as I am not a rule-breaker by nature. That was 4 1/2 years ago and it still smarts to think about it. You’re right; it’s inappropriate shame, and a condition which I have no control over. It is hard enough to have these maladies without all the other garbage like this that comes with them. Hugs.

  • 08trish
    5 years ago

    Now I only take a small underwear bag, no wheels, with a huge pillbox full of meds ( 7 days a week..4 times a day) plus my necessary meds for migraine and muscle relalaxors and pain meds for my neck. Have ever been questioned but found tithe best way to get on the plane. Good luck on your next trip!

  • Jane Leamen
    5 years ago

    Whatever airline you were flying with I would lodge a major complaint and demand a free flight. Also stating that you fly all the time without a problem. I would also mention the names of the people on that flight who were giving you a problem. I would not let this go. Some people just want to cause trouble and think just because they wear a uniform that they run things and can boss people around. Take it to a higher level. i know what it is like to be sick with a migraine. You should have thrown up right on that [post moderated for content].
    Always
    Louise

  • Not Carly Simon
    5 years ago

    Airline travel sucks as the TSA treats us like criminals and the airlines treat us like livestock. But for people who live other places than the coasts, it’s the only alternative to driving so it’s a necessary evil. Still, I’m not sure if the specifics but I’m pretty sure that the airline employees who were yelling at you were violating company policy. It might be worth reporting them to the complaint department. Additionally, I’m pretty sure they broke the law. You could/should consider suing or reporting them.

    Bravo for standing up for yourself in the end but you probably should have started at check in and asked for their supervisor. I think you ran into drones taking the opportunity to exert their limited authority on someone too upset to fight back.

  • HorseAndCarriage
    5 years ago

    Next time, ask for the CRO (Complaint Resolution Officer [Official?]), who all airlines are required to have available during operating hours. The CRO is designed to be the go-between for you and the airline on disability issues, especially since not all airline personnel know the laws and/or understand medical needs.

    All medical bag carry-ons (which don’t count towards your carry-on limit as long as there is only medically-required items in the bag [i.e. you can’t stuff an extra shirt or your laptop in the bag and have it still be considered a medical bag) must still fit the size requirements for carry-on bags (this differs from airline to airline and sometimes plane to plane [be sure to notice the type of plane listed on your reservation, though it can change at the last minute sometimes]), but in your situation, the bag did fit and should have been allowed on without issue. If you require a bag with wheels because your condition prevents you from hand-carrying bags or using back/neck/shoulder straps, be sure to explain this.

    Did you try showing them the bag is medical? While the law doesn’t say they can or can’t ask, I have been asked once before to open a medical bag I was checking “to make sure [I wasn’t] trying to sneak on an extra suit” (in a duffel bag?! That’d be one very wrinkled suit!) and it solved the issue the employee was having with my extra bag. I’ve yet to be asked about my medical carry-on (which is in addition to my carry-on bag and personal item), perhaps because they can see I’m disabled due to my service dog helping me walk, but I would show its contents if needed.

    If you write to the airline, be sure to request a written letter in return that you can carry with you on future flights to show the airline employees that medical bags are allowed as a reasonable accommodation. I have such a letter about checked medical bags (due to an incident of one employee charging me $300+ for them as extra bags [the airline refunded the fees after I wrote to them, plus sent me my requested letter in the mail on their letterhead with a real signature]) and it has definitely been useful more than once! I don’t fly without it. If you instead submit a complaint to the DOT (Department of Transportation), you can carry their ruling on future trips (but do note that it can take a long time, even six months, to hear back from them).

    You might want to see if your conditions (alone or combined) qualify you for medical pre-boarding so you have time to handle any issues or, if no issues, set up your seat with your special cushion, take out any items needed during the flight, etc.

    Good for you for standing up for your rights and your health on that flight! I’ve flown during a bad migraine before, so understand how important it is to keep your supplies with you. You also should never let your meds out of your control, of course.

  • Celeste Cooper
    5 years ago

    I was strip searched behind a flimsy sheet held up by one person, back before they had TSA, because I was wearing my TENS unit on my neck (classic migraine since teens, now cervicogenics in my 6th decade of life). It was so horrifying that I always pack my TENS in the checked bag now. I carry a tennis ball and a cervical neck pillow. I can just imagine how a TSA would flip out today. Air travel is horrible for migraineurs.

    Thank you to all who responded. Great advice.

  • Celeste Cooper
    5 years ago

    Great advise for all of us.

  • Ellen Schnakenberg author
    5 years ago

    HorseAndCarriage – My first question to them was asking what kind of training they got re: passengers with disabilities and illnesses. Was told they didn’t have specific training for them. That made sad sense.

    ~Ellen

  • lara
    5 years ago

    What HorseAndCarriage Said. I was going to point out the Americans with Disabilities Act. I had no idea there were additional laws pertaining to airlines.

    But yeah, uh employees can’t interfere with your medical care in order to “allow” you on a plane and they can’t deny you access to your medication. That’s a big no no.

  • HorseAndCarriage
    5 years ago

    Oh, and your letter to the airline should also ask for those employees to be retrained on the ACAA laws! If I ask for nothing else, I always ask for retraining.

  • Writermom
    5 years ago

    Ellen, this is unbelievable. It has made me so angry! I cannot imagine going through all this. It’s one of the reasons I never want to fly again, no matter what. I would be suing the airline and getting in touch with the Americans with Disabilities group and anyone else I could think of. I would take out huge ads in newspapers with this entire post. Too bad most people would not understand. This is incredibly awful. Never fly that airline again!

  • not so joy
    5 years ago

    Remember when the YouTube song came out “United Breaks Guitars”? Boy did that give United a public relations nightmare. They had to retrain all their baggage handlers and spend a fortune on publicity to counter act that one disgruntled passenger. Ah, the power of the media. Use it.
    While we may have invisible illnesses, we are not invisible ourselves and out to be, no NEED to be heard. If we don’t stand up to bullies while they perceive that they have power, what can anyone do when they actually have power?

  • HorseAndCarriage
    5 years ago

    @larissa – It isn’t a horrible thing, but purposely done that way because different governmental departments oversee different things. Air transportation is under the Department of Transportation, just like the ADA doesn’t cover housing, but there are other laws for that. 🙂

  • lara
    5 years ago

    @HorseAndCarriage

    @Air travel is not covered under the Americans with Disabilities Act (ADA)

    Which is kind of horrible but at least there is another law.

  • HorseAndCarriage
    5 years ago

    Air travel is not covered under the Americans with Disabilities Act (ADA), which is from the Department of Justice (DOJ), but it is under the Air Carrier Access Act (ACAA), which is from the Department of Transportation.

  • Michael Fernandez
    5 years ago

    That’s insane I’d personally have found out her name and informed the TSA as well as her employer about her attitude when it comes to the disabled and ill. I’m so sorry you had this experience, luckily my flight yesterday with a slew of medications in the carry on went just fine. If the airline won’t budge and issue an apology, then start an online petition I’d be glad to sign it , some bad press almost always makes corporations wake up because their stockholders see them for the mess they truly are.

    Good luck with future flights, again so sorry you ever had this experience, hopefully all future traveling goes well for you!

  • Ellen Schnakenberg author
    5 years ago

    Michael Fernandez – I don’t think she had anything to do with TSA, but worked for the airlines itself, as did the other employees I encountered.

    I did get many apologies from corporate, but I can’t see me ever flying them again after this… not unless they can tell me they have given their employees training in how to deal with disabled and ill patients and their needs.

    ~Ellen

  • HorseAndCarriage
    5 years ago

    I’ve had an airline employee actually cover up their name tag when I tried to get their name off it so I could complain later about their rudeness and going against the law! 🙁 The airlines probably keep track of who was working when and where, though, so hopefully complaints get on the right person’s record even without the name.

    The TSA has nothing to do with this incident, however. They are for security, not upholding the laws. They sometimes don’t even know their own TSA regulations and procedures! 😛

  • Stu Chuang Matthews
    5 years ago

    When I fly, I feel like I am not being treated like a human. I avoid flying now. I much prefer to take the train. You can have with you pretty much anything you need on the train. For longer trips, you can have a bed to lay down in if you pay for it. The food is not bad, considering.

    The folks on the train tend to treat you with much more respect and humanity than on the plane. On the plane you are treated like a little child.

  • Ellen Schnakenberg author
    5 years ago

    Stu Chuang Matthews – I agree – I actually love taking the train! (Hate feeling like a sardine in a can)

    ~Ellen

  • HorseAndCarriage
    5 years ago

    And if you fly coach, you’re treated like cattle! 😉

    I fly because it is faster and the trains don’t go over the ocean to other countries, but I will be taking a short train trip instead of flying soon and am looking forward to it! It isn’t cheaper than flights would be, but I’m looking forward to not having to deal with the TSA and getting to the airport crazy early, especially for the two days/one night trip.

  • Jennette Fulda
    5 years ago

    OMG, that is awful! I’m so sorry you went through that. People can be so unsympathetic when you have an invisible disease.

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