Explaining Fibromyalgia to Friends

Hi everyone,

Thank you so much for all your support. You are heaven sent!

I wanted to ask how you talk to your friends and family about having this chronic, painful and roving symptom illness. I have good days, and bad days. Days where I'm affected by all the overlapping disorders (TMJ, IBS-D, chest pain) and am sidelined and days where I can walk for a mile. It's so difficult to predict, and frustrating both for me, and for my friends and family.

Some of them have told me I should consult the work of John Sarno, others have responded with the classic "but you look fine!" and still others don't "believe" that fibro is a real illness.

What do you say to people? What's worked for you best?

it makes sense ticopuppy. what people see is what they "know". It may make it easier for our supporting loved ones. I love the description of the feeling!!!!

couchtater said...
Go to "itsfunnyyoudontlooksick.com" there is a wonderful story there called "the spoon theory". It's written for lupus but it can cover any illness that involves fatigue and pain. Copy it and pass it out to your friends and family. They will look at you with new eyes.

I have two illnesses that drain me and make me very ill at times. I used this to help my family understand me more.

I just checked it out and it's on "butyoudontlooksick.com". Great story and also looks like a great site! Thanks for sharing!!

Connie

I explain it to ppl who'd like to know that it's so much different than the aches and pains I use to experience before my fibro came on.

I tell them it's an extreme tightness along with weakness and exhaustion and more intense pain, then there's the inability to sleep well. I have to be very careful of how much I do and take very good care of myself.

I love the spoon theory too.

Stupid fibro!
I hate forgetting things...
I used to have the mind of a steel trap. I could recall anything that I read or seen years later. Now I can't remember how to spell simple words most days. Sigh.......

I say as little as possible. If I have to explain anything, I simply say Chronic Pain Condition.

Here are my thoughts, Linni, for what they are worth.

I am a professor and I have fibro. I do not accept any excuses for missing class. You have so many absences, and that is that. Use them as you will. If you have a medical problem, I only need to know what can help you succeed in my class. While the rest of it is interesting, it is simply not relevant to our relationship. My job is to teach specific information and to gauge how well you have learned it.

So, I say this lovingly, to give you an understanding of what my response would be. If you miss too many of my classes due to a medical condition, you need to drop the class. While 'life situations' can be limiting to doing work, they do not matter to me as your professor. Just being honest.

I never cancel classes for ill health, BTW. The only time in the past four years I had to cancel class was when I was hospitalized. I cancelled one rehearsal because I was vomiting due to a migraine. I hold class when I am sick, when I haven't slept, when I have a migraine...

about a decade ago, I had a student who IDed herself to me as having lupus. I explained to her I understood that she had specific limitations, and that I understood, probably better than she might realize, what those limitations are. Then, I explained that I did not grant extensions, excuse absences, etc. THEN, I talked to her about what she might do to help herself perform better. She was a commuter as well. We talked about diet, about managing time effectively, and sleep, and dealing with the drive in a way that would enable her to attend class. Finding a place to have some quiet time on campus, a place to nap, carrying an alarm clock to assure she didn't overslept, tactics for readying and studying and writing for successful outcomes. I gave her numbers for student health, for counseling, for the tutor program. My memory is that she got a C+.

Another professor talked to me about her. This professor had failed the student several times, due to missing classes and unsubmitted work. This other prof was very skeptical of the student's motivations, and had heard about the Lupus. But, it simply is not a factor, really.

So, by all means, talk to the prof. Just realize your relationship. S/He does not need an abstract of the condition.

Just trying to give another POV. There will be some, I suppose, who will say I am too strict, or too unsympathetic. I do not think either is true. My responsibility is to my discipline, and ensuring my student's have demonstrated mastery of the subject matter.

Ahh to Myself09, you did not offend me in the least. I'm not one to use my illness as an excuse and I didn't mean for it to come across as such. There are days I can't make it to class and I know my limitations (I'm 1/2 way through a bachelor's degree, was working full time and am taking (these classes) in Pastoral Care, on top of the others. So yeppers I agree, I have dropped out of classes or taken time off because I knew my work schedule and taking classes would just "do me in".

I guess I would have been better in asking, how does a person answer the question is it a chronic illness or autoimmune (no) but ... how to describe it? The professor is a friend that just found out that I have it (from another friend in class). So I would like to be able to describe it with out coming across as  "poor me syndrome".

Trust me I still want to curl up in bed today and SLEEP...but instead was lucky enough to go help a friend in his catering business, write a term paper (group project) go grocery shopping and have my grandbabies over for a sleepover!

Fishchris...like like the malfunction idea...probably because it describes me ALOT! lol

well said madison.

I'm not much for planning what I'll do, so I usually just end up saying, "I have Fibromyalgia - it's a chronic pain condition." Most of the time they'll say, "what's that?" or "my sister has that," or some such. I don't mind the conversations, the questions, etc. I guess I figure maybe they'll know something I don't, or I'll educate them.

Unless they get dismissive and say it's a wastebasket diagnosis or the equivalent. Grrrr...then I set them straight!! ;D

Debbie