Wednesday, July 29, 2009

Things A Person With An Invisible Illness Hate To Hear


This is some of the top things I can't stand to hear from people who just don't "get it". It may be geared more twards Migraine, but I really want you all to add things you can't stand hearing in a comment - no matter what ICI you are suffering from.

This one is now a really popular web site: "But you don't look sick" I HATE this! So if I had a cast on my arm or was in a wheelchair or something, that would give me more of a reason to be in pain than the fact that I have a neurological disorder?

"We gotta find you a good doctor" - I have an excellent doctor, thank you. The fact of the matter is, I have an incurable disease, so until you walk a mile in my shoes and feel what my life is like and how hard I try to be well, please, just don't.

I have not had this one said to me, but I hear it a lot from others: "You're just not praying hard enough" or "You need to believe in God". First of all, what my religious beliefs are have nothing at all to do with my illness. I wonder what these people say to a person in their congregation or if their priest or minister has an ICI.....or what about a Nun? They are married to God so they should be really healthy by this persons standards.

This one is Migraine specific: "Oh, you have Migraines? I had one.....once, so I know what you are going through." Chances are, if you've only had one Migraine, it probably was not a Migraine. Saying that you know what I'm going through because you "had one once" is not realistic. I get them and tension headaches on a DAILY BASIS.

"Go to a chiropractor" - Yes, there are some that say chiropractic has helped them. I have been to one myself. I used to go all the time. But they will not cure my Migraines and they will cost me a ton of money in co-pays. Sometimes, a trip to the chiropractor (or even an acupuncturist) can trigger a Migraine. I don't know, I'm a believer in pharmacology! As my friend Kelly says: "Better living through science."

Another Migraine specific one, but I'm sure others with chronic pain hear something similar from time to time: "Oh, you have a headache? I have some Advil." First of all, Advil won't abort a Migraine. Second of all, it won't even touch the type of pain I experience from a Migraine or even a tension type headache. I have triptans, narcotics and muscle relaxers (oh my!) for the pain I have. Your Advil is like a tic tac to me, and if you know me and know that I go to a Migraine specialist every six weeks, along with take a handful of preventive drugs and supplements every day - all this does is make me feel bad about myself and remind me of how sick I really am.

Saying something like "oh, I heard about this new drug they are using for Migraines now on the news!" Chances are, it's not new, it's just the first time you've heard of it. Trust me, if it's about Migraine, I am pretty well read on what's on the market as far as preventives and other treatments. Again, this comment just annoys me more than anything else.

"I have a Migraine" - this one annoys me for two reasons. Either you just have a headache and you are exaggerating or you really have a Migraine and are too lazy to go to the doctor and get diagnosed. This one only applies to the people who misuse the word - not the ones that are diagnosed, going to the doctor, getting help and really know what they are talking about. This one also annoys me because people use it as an excuse to take off sick from work or, even better, drug seekers who know they may be able to score narcotics in the ER using "migraine" as an excuse. Thank you, fake migraine sufferers, for making the peoples lives who have Migraine that much more difficult to get proper treatment because now they thing ALL of us are just drug seekers. It takes a lot to get what we need when we end up in the ER due to having a Migraine for 3 days - and I'll tell you - as I'm sure every other Migraineur out there will agree - if an IV drip of straight up saline would take it away - then that would be what I'd want. It's not about the narcotics - a lot of us say up front to the ER docs that we would rather NOT be treated with narcotics. This is for two reasons: 1. then they know we are for real and not faking it. and 2. narcotics only mask the pain, they won't break the Migraine.

"Why don't you want a drink?", "Why won't you stay a little longer." All of those Why don't you or "you used to" type statements / questions just remind me that I can't drink that much because it will trigger a Migraine, and I need my sleep to stay on schedule as to not trigger a Migraine. Whining and trying to guilt me into something when you already know the reason behind it - especially if I am in pain - just makes me not want to deal. Thank goodness all my close friends have learned enough about what I go through to not do this to me. Some family members, well that's another story.

My friend Heather has a great little signature on her posts over at My Migraine Connection. It says: My disabling chronic illness is more real than your imaginary medical expertise.

I love this quote. It is so very very true! If only people would think before they speak, the world would be a much better place.

I can't wait to hear what you all have to say! I'm sure this is not all of them!

10 comments:

Shawn said...

What a beautiful article. I am so proud of you for putting such a pro-science face on your work. Your awareness of pseudo-science, non-science, anti-science, and quackery is an admirable addition to the informative and friendly nature of your work. I have learned so much from you, and I am very happy that our separate disciplines in skepticism are starting to overlap as we both continue daily to enrich our lives with "good" knowledge and filter out the endless barrage of bullshit.

Why don't Christians pray to God for amputees to grow their limbs back?

chrissy said...

Just love this post....so true in all you said...when you get a chance read my post called..."insensitive people"...on my blog.
i think out of them all i really HATE the "pc powders work great for me"....sure they do...you don't get migraines..it will take like 5 hundred years for people to see that migraines and headaches are 2 different things....great work.....:)

chrissy said...

bye the way..nice to see you are back at blogging world....:)

chrissy said...

can you tell me how to send the Kreativ Blogger award...where do i get it...:)

Eileen said...

Chrissy - thanks so much for your comments!

I am not sure where to get the Kreativ Blogger award....I got it quite some time ago from a friend. I would think it may still be going around the internet...you can always see if there is something in Google about it...?? That would be the first place I would check.

Thanks for reading!

klgm said...

Perfect!! I laughed out loud. I also like..."are you sure you're drinking enough water??"

Class factotum said...

Narcotics do nothing for me except make me sleepy and unable to sleep.

I get headaches. I don't classify them as migraine because I have a friend who gets true, take to her room, debilitating migraines. I have annoying headaches that happen several times a week and go away (sometimes) with imitrex, but I am not debilitated. I don't think my h.a. deserve the title of "migraine!"

I was amazed years ago when I was staying with a friend and asked for aspirin (before I knew about imitrex) and she told me she had none. What do you do when you have a headache, I asked her. I never get headaches! she said.

I was floored. It had never occurred to me that there are people who never get headaches. I thought it was normal to have a few a week.

Anonymous said...

Oh my gosh! Someone else in the world understands, ha ha ha!

When people find out that I have migraines, many give that same example: "Oh, I had a migraine once! It was terrible." In fact, I've experienced many of these situations.

Acupuncture didn't work on me either. I think it's just a placebo. It seemed to help for 30 minutes, and then sometimes I'd get a major headache afterward! Peppermint oil seems to help me most of all.

Thanks for the awesome article!

thepurplechick said...

I feel your pain. When I read your post it kind of reminded me of the episode of mystery diagnosis where a woman was getting crippling migraines and it turned out to be related to her heart. http://m.imdb.com/title/tt1215335/ Just a thought. Keep plugging away until you find the answer. Only you know your body the best.

Anonymous said...

WOW just what I was searching for. Came here by searching for foreign

my weblog ... air conditioning repair scottsdale az