Migraine

It never ceases to amaze and disturb me how many people on this board post that thier spouse's, friends, family are unsympathetic to migraine disease or flat out don't believe in it. The idea that someone could yell at you while driving you to the ER, or while your throwing up from the amount of pain your in is just terrible.

Though I am really luck to have a lot of support, I thought this would help out others who don't.

Terri- I hope you won't mind me taking the liberty of posting this in a super obvious place, because I had never seen it before and I think it is BRILLIANT! It is a MUST READ for the family/friends of anyone who has migraines. I just wanted it "out there" for others who may not have found it yet.



I don't know if this is going to help anyone, but maybe it will.

Terri's Letter- For those who don't Get it

My DH is so supportive. He is sometimes a better judge of my pain and distress than I am. He usually tells me it is time to go to the ER.

The group that doesn't seem to understand is my church. I thing some understand, but some don't. For example, my pastor's wife and a good friend has taken me to the ER on more than one occaision.

On the other hand, we watch a DVD on Wed. nights. They almost always turn the lights off. There is something about a TV in a dark room. I just can't watch TV like that. Sometimes it will trigger a migraine and sometimes not. But I find that situation so annoying that I can't watch it.

My question how do I (and everyone else) educate a group of people. One at a time seems tedious to me, but that may be the way to go.

I am very fortunate that my DBF is very supportive. He's currently reading Teri's book. My mother and sister are also migraineurs, so they (unfortunately) understand my pain all too well. A number of my coworkers don't really understand much about migraines, but I'm also not very open with them about my illness.

Teri has some suggestions for how to deal with those who don't "get it" that may be helpful for you.

Migraine and Headache Education for Those Who "Don't Get It"

I'm constantly educating my family about migraines. Sometimes, when i think they have it, a week later they say something and I'm all

Come on, my mother JUST began to realize that she has aura...And I've been doing this migraine thing since a young age, with aura. ARGH! I talked to her about connecting the dots the other day and the time it takes to understand the signals your body is giving you about a forthcoming attack. It's taken me two years to realize what my sugar cravings or euphoria is about, so I don't expect her to get it right away either!

I think it's a testament to the bad information there is out there on migraine, and to the fact that good migraine info just isn't being passed around like it should be.

Also, I think we're living in an age where every ailment is bombarding us through the news and advertising. It seems like there is a pill for everything, so a lot of people likely shrug it off because they are overwhelemed by everyone else's potential health problems.

I just got back from 2 and a half weeks at my mother's house, helping her recover from knee replacement surgery. While I was there, my head hurt almost every day and I had two days of "put me in bed" migraines. The rest of the time I muddled through with much more relpax and frova than I should have taken. It couldn't be helped.

What amazed me is my mom's lack of understanding. She was sympathetic about my head hurting but still expected me to do everything as if I didn't have one. She would constantly ask me if I had taken my meds and then get annoyed because they didn't work within the hour. She would tell me to lay down and within an hour or so, be calling me to do something for her.

I know she was in pain and couldn't do as much as usual, but she didn't even try to do anything on my bed-ridden days. She would talk about how glad she was that I was on temporary disability for my migraines and that she was glad I was taking care of myself, but then she would have a gazillion things for me to do (all of which didn't need to be done that day and could wait).

Amazing!

Kat,

Thanks for starting this discussion. It is unfortunate that so many people still don't take migraine disease seriously. Thanks to people like Teri, this forum and it's members, it is finally coming to light how disabling this disease can be. This forum is truly a God send for me!

I'm lucky to have an understanding immediate family. My kids have only known me with migraines. My DH began learning after we started dating and thankfully he understands more now and is my rock. He makes sure I go to the ER when I should and makes sure I'm fed and watered when I'm down and out. My extended family still doesn't realize how disruptive they are but that's okay, they'll understand sooner or later. I hope, anyway

That's what it feels like sometimes. Smashing skiillets on heads over and over again. If you can't see it,(and we know you can't see Migraine disease) some people don't get it, and probably never will.

When we've done everything we can to educate and inform our family, friends and co-workers about Migraine disease and they still don't understand, it may be time to give up the battle. There are certain people who may never "get it."

Maybe when family/friends don't get it, coping skills would be helpful on how to manage those who don't get it. I'm talking about after we've tried educating them, giving them information,and talking with them. Then it may be time to say to ourselves, we have a chronic condition, we are doing the best we can, and if "they" aren't going to "get it," it's their problem, not mine.

Managing Migraine disease and feeling better is my goal, jump on board and support me or hop off and stay out of my way!!

Nancy- I just got(a greatly needed) laugh for the day reading your response. It is so true. It's my job to put up boundaries with those who don't understand my disease and take care of myself sometimes. My husband is pretty understanding, but being a chronic pain patient with his own condition, many times he is "so much worse" than I am. He "understands" my pain because he has his own- I am basically healthy, and he isn't. The sad truth is when we got married 1 1/2 years ago, my migraines were not at the point that they are now. So he has been patient adjusting to someone being a lot sicker than they were before. At the 12 step group I go to, they constantly remind us that you "can't control other people, places, or things" Thanks for this reminder that putting up healthy boundaries with others is MY job- and an important part of recovery from this disease.

Valerie

We deal with this issue with teenage friends not understanding migraines. My daughter's friends come to me and say, why is she acting so different? I tell them migraines are not going to be anything they understand and that if their head hurt 24 hours a day 7 days a week then they wouldn't be their perky self either.

I often say, a little support would go a long way but I don't think they get it.

Sarah just gets to where she doesn't talk about it and says she's fine when her head is really pounding.

I admit though, as her mom, I didn't get it for a long time either.

Melanie
lovemykids411

I lost a number of friends in college because of my migraines and the depression I get along with them. My headaches/migraines became chronic in my early teens, but became much worse in college, which was when I was finally diagnosed. I remember how awful it felt for me, not only being sick all the time with 24/7 head pain, but also having no one around for support. I was fortunate that once I had a diagnosis that the first preventive I tried, Topamax, worked within a week of me starting it with few side effects, but the social damage was already done and the mild depression lingered.

Of course, I didn't understand a lot of what I was dealing with, so it was hard to ask for that understanding from others. I just knew that I was sick and I was depressed, and none of my friends seemed very willing to understand that. (Strangely, though, I got more understanding for the depression than I ever did for the migraines.)

I have a much better support system in place now, which is good, since I'm having a much harder time finding a treatment plan. But I've learned to be very cautious about talking about my health. I mentioned this in another thread, how I feel like I live a public and a private life. I hide my migraine disease as much as possible when I'm at work, and only let down those walls I've built up when I'm around those I trust.

On the other hand, I do have the AHDA flier pinned up to the outside of my cubicle, and on the employee bulletin board with my extension on it. So that is a rather public display of my illness.

Some of my coworkers have only ever demonstrated to me how impossible it seems to be for them to understand anything about migraine disease - alternately offering me Advil or Percocet for my "headache".

Yeah I posted in another internet group for people who have a different medical problem about migraine in response to someone being sneering about someone coming into work and mentioning they had a migraine and had almost not been able to come to work. The attitude was "it was only a migraine therefore they were a whinger". Anyhow my response was that migraines can be debilitating, are often not optimally treated (or treated at all) and it is hard to work with one and that I would prefer a work mate to let me know if they had a migraine. The reasons was so that we could work something out with the workload to ease things for them but also so I would know that something was up rather than the possibility of them being annoyed with me.
Needless to say my response led to even more abuse to which I stood up to.
Good topic
Cheers DJ

Well My brother is the one that I deal with the most as far as my migraines go. For the most part he tries to understand, but his idea for pain management is to #### it up. He has never had a bad headache in his life. He calls me almost every day and in the beginning If I had a headache I would tell him but I could hear him moan on the other side of the phone like ( not again ) so now when he asks how I'm doing I just say ok. The few times I have asked him to take me to the ER he asked me if it was really necessary. I don't think he understands that I spend half of my days in bed with a bucket throwing up. He's always telling me if I stop taking all the pills I'm on the headaches will go away, He doesn't understand that most of those pills are supposed to help control the headache. But when I was seeing a Dr. in Boston which is about an hour away he always went with me and he's always there when I need him for the most part so I really shouldn't complain, I did just email him Terri's Letter- For those who don't Get it. We will see what he says about that. I'm sure he thinks he knows more than he really does LOL.

Jim


Edited by moderator. Please keep language family friendly

Hi Jim,

I'll be interested to hear what your brother has to say.

Well my brother read the article I sent him and he called me and asked if I thought he wasn't understanding and caring. LOL So I told him that I thought that he didn't fully understood what I go thru every day and that I thought it would be a good idea if he went onto this web site and read some of the articles that are posted here. He said he would when he had time, So at this point we will leave it at that. But I will bug him about it till he does it LOL. But all in all I shouldn't complain he is always there when I need him to take me to the Dr's or the ER. He makes an effort to be there for me. So it was good for a chuckle but I wont give him to much of a hard time about it. Hi did call me today and ask me to help him put his boat in the water and when I said I wasn't feeling up to it he didn't give me a hard time like he normally would have so maybe reading that did help a little. We will see what the future holds.

Jim

That's great, Jim