How Can You Get Family to Understand Migraine Pain?

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How Can You Get Family to Understand Migraine Pain?

Post  Brenda L. on Sat Apr 02, 2016 8:57 pm

I've had severe chronic migraine for several years and I'm in chronic pain. I see a pain management doctor and he's doing his best. Due to new regulations, he's had to cut back my meds, so I am suffering more than I did in the past. I can barely function---the pain and nausea are absolutely debilitating. My sensitivity to lights and sounds is extreme. I can barely go out into the sunlight and the sound of a dog barking goes right through my head! I'm so sick I can barely get out of bed, sometimes.

Certain members of my family do not understand my struggle at all. My mom and dad were both very sympathetic and understanding, but they are both gone now. All that's left of my family are two brothers, neither one of whom understands a thing about migraines!

One of my brothers is impossible. He hates me, so of course he's not going to have any empathy or sympathy for my illness. (He's accused me of being a liar, a hypochondriac, a malingerer, an addict, histrionic, exaggerating, and just about every negative stereotype you can imagine).

This brother told me, "When I get a headache, I go running. Why don't you do that?" It's NOT a 'headache'---it's a MIGRAINE! And a migraine leaves me stuck in bed. Any exertion makes the pain WORSE, not better. He doesn't understand the first thing about MIGRAINE. He probably thinks I'm complaining about minor headaches and making a big deal out of nothing.

My other brother and I have a pretty good relationship, but he also does NOT understand migraine. This brother claims to get occasional minor migraines, but I'm in serious doubt. He has NEVER seen a doctor or taken any kind of medicine. He tells me to 'just go to sleep"???

I'm in such a terrible state that I may have to go and live near my decent brother, because I really don't have anyone else. However, when I've told my good brother that it's NOT safe for me to drive while in the midst of a migraine attack, he just tells me to 'be more careful'! I've had some close calls lately, all because I no longer have my mom around to drive me places.

Is there ANY way that I can educate my brothers as to the living hell that severe migraineurs go through? I've tried sending articles via email, but the message isn't getting through. My doctor is already pressed for time because my case is so complex, so I feel very awkward asking my doctor to write a letter describing my condition. I really don't want to tell my doctor that my own brothers don't believe I'm in as much pain as I claim to be!

The BIG problem is this: I haven't seen 'bad' brother for 20 years, so of course he knows NOTHING about my condition. Plus, he apparently hates me, for reasons I'll never understand. I only see my 'good' brother ONCE a YEAR, for Christmas Day. I always put my best face forward for the holidays, so of course my brother NEVER saw how much pain I was really experiencing. I did NOT want to ruin everyone's Christmas by complaining about how much pain I was in.

Thanks for ANY advice or ideas about how I can convey to these relatives the severity of this awful condition. I cannot get them to take this seriously. I'm totally debilitated, and I don't get any sympathy or help at all from my siblings. Somehow, I'm supposed to take care of EVERYTHING, totally alone, and in extreme pain. It truly is more than I can handle, especially now that I've lost my wonderful mother AND my medicine dose is being decreased. I can barely function at all. This is getting really SCARY.

Thanks,
Brenda

Brenda L.

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Re: How Can You Get Family to Understand Migraine Pain?

Post  Migrainegirl on Sat Apr 02, 2016 10:26 pm

Brenda, for people who are unsympathetic I am not sure there really is a way. The best description I have come up with is to tell them to imagine getting a brain freeze. Then imagine that lasting for 2 days. That seems to come closest to conveying what it is like.

But I also know that there are none so blind as those who don't want to see. So I wouldn't waste a lot of emotional energy into trying to convince anyone like your unpleasant brother. It's just him.

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Re: How Can You Get Family to Understand Migraine Pain?

Post  Mini on Mon Apr 04, 2016 7:07 am

I am so fed up, I/ve just tried to reply to your post because I can relate to it so much, but suddenly it was all deleted before I had a chance to post it. I am so very sorry this is happening to your Brenda. My brother was and still is horrible to me because my health is so bad.
I better stop, before it deletes again.

Mini

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Re: How Can You Get Family to Understand Migraine Pain?

Post  tortoisegirl on Mon Apr 04, 2016 1:53 pm

I agree there isn't much to do if they won't see reason. I stopped even telling people or talking about it, except with my hubby and doctors. I usually do better describing it as chronic pain than headache too.

I also bring up that it's not just pain, and that I find pain in the head worse than other parts of the body as it impacts me being able to think straight. My IQ has dropped significantly.

Bringing up that you have good & bad days and may be able to power through something but will pay for it later may help explain if you seem fine when they see you. I imagine most folks in my life have no clue how bad off I am as I'm a good faker and don't go out at my worst.

I think some folks think that anyone with a non visible or non provable condition who isn't able to work is mooching off the system (even if not collecting disability).

They quickly change their mind if they end up in a similar situation! Besides that, its probably not worth your effort to convince them. Best wishes.

Mini - I suggest a select all and copy of your post on this and all forums before hitting send. Then if it gets hung up, all you have to do is paste and try again. You could also draft a reply offline in Word or whatever. My internet goes out all the time so I have to do that.

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Re: How Can You Get Family to Understand Migraine Pain?

Post  sailingmuffin on Tue Apr 05, 2016 9:24 pm

Hi,

It is hard to explain migraine to those who "don't get it," but it is much worse when it is your own family.

I have had Chronic Intractable Migraine/New Daily Persistent headache since age 17, now 35. I have two older brothers- P who is 11 years older and J who is 8 years older. Both of my parents are physicians. Both of my brothers are very intelligent. P understands the Migraines better than J, but I don't think either one really gets it. It doesn't matter how many times I explain it.

The good news is that I have a fairly good relationship with both of my brothers. I finally had to accept the fact that J just doesn't deal well with any medical problem or situation. A few years ago, one of his business partners had a fall and then had stroke-like symptoms- it turned out that he actually had an epidural hematoma that required emergency brain surgery. One week later we were eating supper and J said, "He isn't back to work yet. He said he would try to come back soon."
Well, J, he had brain surgery!"
"But Dad, shouldn't he be back now?"
"No. They had to cut open his skull and drain fluid off it. People are out of work longer than a week for a knee surgery."
He just doesn't get it. I also have a fainting issue. I have a wonderful Medical Alert Dog. I got Dora about the same time my nephew was born. My nephew has seen Dora once. He doesn't know about the fainting-yet. This is due to the fact that J can't handle it. However, J is making more of an effort to be understanding. He has actually run in to a few others who have migraine and dysautonomia. He listened to them, but not to us.

I wish I had a magic wand to help others understand.

Sometimes, people may listen more to doctors or a third party. If you are in bad shape and feel you need to be near your family for support, why don't you ask your brother to come along to a doctor's appointment? Maybe that could help him understand the situation more. What is your current support system like? Do you have friends who could help? Does your brother have any children? If you do end up moving, I'd definitely make sure you could get in with a good headache specialist or keep your current doctor before making a huge change. It might also help to sit down and explain the situation or even write down what you think would help. Is there anything you can offer to help your brother with- ie children, house sitting, etc. Sometimes people will respond better if you ask for help with a specific thing.

I think the best thing to do would be to sit down and explain what is going on and that you really need his support and help.

I hope you have some good luck.

Pain free days,
sailing


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