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What is the one thing you'd want someone without fibro to know?

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Posted 6/11/2014 1:50 AM (GMT 0)
A close friend of mine has been dealing with fibromyalgia for years and I've seen it effect every sphere of her life - job, relationships, family and social interactions, mental health, etc. I've watched her battle doctors and doubting co-workers, and have observed the ways she is treated differently in society when she is well vs. not well. I try to support her as much as I can but often feel like I'm falling short. If there was one thing that stood out to you in your interactions with friends and family who are trying (but perhaps failing) to be supportive, what would it be? Is there one important thing that you would want people who do not have fibromyalgia to understand?
Posted 6/11/2014 2:13 AM (GMT 0)
Don't try to out do them in their complaints. If they say, "my back is hurting me", ask if there's something you can do for them. Don't say, "the other day I tried to lift a huge box and my back was sore all evening".

Be there to help them if they need help.
Posted 6/11/2014 3:40 AM (GMT 0)
Believe them and stick up for her im still battling them to this day ive been all alone
Posted 6/11/2014 4:20 AM (GMT 0)
Bmcny,

Great question!! Boy, if more "normal" people cared enough to ask, our lives would be a whole lot easier. Thank you!

I agree with Sammie.

I'd say: Believe us, even when what we're saying doesn't even seem possible, and we look fine...we're never really fine. If we say we can't lift a quart of milk without adding to our pain and fatigue - even though we could yesterday - we really can't. We don't know why.

Patience means a lot, too. We're not trying to get attention or get out of doing things; we're more unhappy than anyone that we have to live such a restricted life! This was not in our plans.

I'm glad your friend has you supporting her. Good luck to you both.

Debbie
Posted 6/11/2014 4:23 AM (GMT 0)
Please show through your actions... the realization... that I didn't choose to be this way and I am doing the best I can.
Posted 6/11/2014 5:49 AM (GMT 0)
Just the fact that you are here is showing a lot of support...thats nice..my husband tries with me...and most of the time succeeds..
Friends are no so good about caring or understanding, nor are parts of family...we all would like more understanding and encouragement with this disease...

My sister has it and just lives in a tighter community which gives her better support..

Just be there when you can ..its a tough one
Posted 6/11/2014 6:02 AM (GMT 0)
Hi. And welcome! I say all of the above. Believing the friend is so important. So many times we feel like people are not really listening to us. Then we can even start questioning ourselves since it doesn't make sense to us either. This is such a strange illness with no two exactly alike. I do thank you for caring, though. Your friend is very fortunate to have you on her side.

You also could read Fibro 101...the first thread on the forum. There is a lot of good information there to help you understand this illness better. That can help your friend also.

Sherrine
Posted 6/11/2014 6:52 AM (GMT 0)
Wow! To have a friend like you would be great! She is very blessed to have a caring friend. I feel lonely at times because I can't get out there like I use. To have a friend that would just want to come over and have a movie night or so.

To understand one day she can do her errands and other days her muscles are wipe out. Lifting her spirits each day is great. Depression is common in fibro and I believe because the body gets tired of being chronically sick. The pain is very tiring. I found out listening to music, exercise can really help the pain be distracted. I guess I could go on and on. Thanks for asking!T

Maybe your friend would like to join the forum. It has given me so much support that I never feel alone anymore. Plus you learn a wealth of info about fibro, new studies and meds too.

Post Edited (ak angel) : 6/11/2014 12:56:13 AM (GMT-6)

Posted 6/11/2014 10:41 AM (GMT 0)
I would love for people who don't have fibro to know that every day is different. I might be able to work 'like a horse' today, but next week I may not be able to do much of anything.

The ever-changing fibro.....
Posted 6/11/2014 5:59 PM (GMT 0)
What a great friend you are!

Like couchtater I say the same thing. People will say how their knees or shoulders hurt sometimes too. They don't get it. I recently explained to friends that I feel like they do when they have the flu. All achy all over plus maybe an incredible pain in a hip or wrist etc. at the same time. The difference is I feel like this almost everyday.

Some people don't understand how I can walk everyday, bike ride, do yoga etc if I feel so bad. I tell them these activities actually make me feel better when I do them. I'm sure some of them think everything is in my head, that I am exaggerating.
Posted 6/11/2014 8:06 PM (GMT 0)
Agree with all, but particularly luvzminis...today I might feel okay and make plans with my friend to get together for lunch next week, but I wake up the day of and may feel horrible and have to cancel. Our plans have to be flexible. In addition to, but connected to, this idea is that how I am feeling inside is often not reflected in how I look outside. If I had a nickel for every person who tells me, "You look great -- you must be feeling better!" I could retire. :) There's a commercial on TV that talks about lupus and it shows a woman putting on a smiling mask before she leaves the house; I feel like I do this metaphorically every day. I have a T-shirt that says, "If I looked on the outside how I felt on the inside, I would scare your children."

I also get tired of people saying, "If only you would...." (try this supplement, try this alternative treatment, exercise more, get more sleep, be less stressed, not work so hard). Everyone's got an idea because this friend of their mother's cousin tried it and it "cured" them. I try to listen politely and thank them for their input because I know they mean well, but the constant subtle reinforcement that I *could* get better if I tried to creates more stress for me.
Posted 6/11/2014 10:19 PM (GMT 0)
Thank you so much to everyone who has replied so far! You've given me a lot to think about, especially your insights about how different you may feel from day to day, or even hour to hour. I think for a lot of us who are not in your shoes try to understand and just don't do a very good job. For example, I think a lot of people can wrap their heads around chronic illness that manifests in a constant, progressive way OR in a relapsing/remitting sort of way where you have long stretches of acute issues and then periods of "remission", but fibromyalgia doesn't work that way and it sounds like there's just not a lot of understanding around that.

And ilsegrrl - thank you for that reminder about "helpful suggestions". I catch myself wanting to do that sometimes, when really I just need to be there for her. I had not thought about the unspoken messages I would be sending with those suggestions - that I know something more about this illness than the person who is living with it, and that they must not be trying hard enough to get well.
Posted 6/13/2014 1:00 AM (GMT 0)
Offer help, and mean it! If she is responsible for yard work then she might be grateful for some help with that once in a while. Anything can be turned into a social activity so make it fun while you're at it.
Posted 6/13/2014 2:10 AM (GMT 0)
Hi Bmcny,

I think it is awesome that you are there for your friend. And that you are trying to understand it. Not a lot of people do unless they have it... Kudos to you my friend!!!

It is truly hard explaining fibromyalgia to people who don't have it, or can't comprehend it. The feeling you have of hurting all the time and being exhausted. The grieving that you do over not being able to do what you could do what seems like yesterday... The feeling useless for not being able to do anything. And the depression that you get over the whole situation. Keep your friend smiling and active. Moving is the best thing a person can do for themselves. And keeping a good attitude.

Life really changes for a person with fibromyalgia. We are definitely not the person we use to be. But we are somebody new. And we have to cope with that and adjust. But it can be done, and we can still live a fulfilling life.

You are an awesome friend.

Best wishes...

Hugs, Karen...
Posted 6/13/2014 2:40 AM (GMT 0)
You are the meaning of what a "true friend" is. Your friend w Fibro us extremely lucky to have you in here life.

I do not feel like any of my family or friends understand. I have a very close friend w Fibro...I some times wonder if she truly believes I have it,
My Sister in law says she has it. She doesn't see a Dr for it but I certainly don't want to no relieve get, as I don't want people not to believe me. I only bring this up because my husband will compare me to her. I miss work, she doesn't, I'm on pain meds she isn't...anyway you get the story.
No one in my life truly understands...my husband is getting there. He finally said I can no longer work full time and need to reduce my hors or find a new job with less hours! Starting Monday I'm down to 6 hours a day!!! I am so excited
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