How do you explain illness to others outside your family?

*I try not to most of the time, unless they ask. People don't see anything wrong, so they tend not to really believe it anyway. Hell, I have a hard enough time explaining it to family members and getting them to accept it!! If I do explain it.

*I try to give as much info as I can about Fibromyalgia, especially if they don't know much about the illness. I try my hardest to keep my personal story personal. I don't want anyone to think I am crazy or to feel sorry for me. This is a lonely, painful, misunderstood illness, that only those who have it (and some of those living with those who have it) can ever understand. The best we can hope for is awareness and acceptance.

*Wide spread pain all over the body, fatigue, depression. Now weather they be listening to you or interested is another thing, gentle hugs to everyone.

*Good question! I cannot get people to understand. They look at me and say you look fine...if only I felt the same way. I hope one day people will understand that this is real and we need their support.

*Well, I don't talk about it unless I think it's relevant..and when I do, I just tell people it is a central nervous system disorder that messes with all of the body's systems and causes extreme pain and fatigue. If that doesn't make sense, then I resort to telling people "it's like M.S., only it's not life threatening".

*It's very hard I get more upset telling others more than immediate family i.e. husband and kids close relatives well don't like to be a pest or a moaner but we will get there one day FibroDuck with all the work you do x x

*A bit like ME (which they all seem to understand) but with hot knitting needles going though my bones and joints all the time.

*I feel exactly as you do Molly. Its hard enough without trying to 'convince' people that its real. I have this really great bunch of Fibro friends on Facebook. When I am having a bad day, I unload to you all...you are the best support system I could ever ask for.

*I explain it as a "nerve disorder". Describe the constant excruciating pain and fatigue. If they ask I will go into more detail explaining how I need to limit activity and what that means. Then I go into the details of the pains and how my nerves misread signals, ending up telling my brain that a touch is a burn or that my shoulder is dislocated.

I try to describe it in a way that others can associate their pains to fully understand the intensity of my discomfort. I mention running multiple marathons a lot too.

*I sometimes explain it as a "flu" that never goes away. Most people seem to relate to that. The aches, pains, sore muscles; when even your skin and hair hurts. Ugh.

*The kids I teach seem to be able to relate to it if I say it's kind of like having arthritis in my muscles! Only way I've found of giving them an answer that doesn't require more detail. I tried the ME approach but they hadn't heard of it. However, they now think I have arthritis as well anyway. Meh!

I'm do the same as Ali say its like M.E and with bit extra to it! I've also said if you have pc then Google it, it saves time in you explaining it! then that person gets a better understanding about it x

*With great difficulty, can be explained quite easily if people are prepared to listen, otherwise it's very very difficult

*I don't! I can't even get la family to understand it!

*So hard even me partner forgets sometime that I'm ill.

*I explain it as feeling like you've got flu all the time and tell people FM is in the same family as ME and MS. They seem to understand this, but unless you have FM, nobody appreciated how you really feel because, as we all know, we look fine!!!

*Not easily, I tell them I ache from head to toe, 24/7 And I take 10 tablets in the morning and wear a painkilling patch.

*I say its like having the flue every day (those are my good days) my bad days mean I can hardly get up it hurts so much. I say its similar to arthritis but it affects the muscles around the joints (people seem to grasp that).

I also say my pain level is 10 times more sensitive than most peoples... that if they pricked their finger with a pin in a few minutes they would forget about it. But for me it would still be hurting in half an hour and it would feel like I had cut my finger. I also say that if I get stressed emotionally or do too much physically its bring on a flare up.

*I try to use the spoon theory to explain it to people. But even that does not explain the days when my pain level is over an 8. There are new TV commercials on in the US that explain that it is over stimulated nerves that send constant pain signals. Even the commercials don't do Fibro justice as they only portray the way it effects people with a mild case.

*I feel 'lucky' that I was diagnosed with PM rather than FM because at last it's treatable and recognised. I had a friend experiencing the same symptoms at the same time, but because she didn't respond to steroids, she was seen as 'hysterical' and "imagining it". She was in as much genuine pain as me, but no medication could help her. This is why I'm with you. For many months I thought I had FM. I know how that feels.
*I love it when someone you haven't seen for a while comes up to you and says 'How are you, how you doing?' I often reply, well its funny you should ask, or...do you really want the truth, and then I give 'em a quick synopsis and you soon find out how good a friend they are. I have got passed the anger stage and why me stage and now I say like it is.....and give them a link to the FM UK site!

*I gave up tellin people years ago as they don,t even listen any more!!!

*Well this is me..Please anyone feel free to print it off it you think it may help! Gentle hugs all:

Fibromyalgia isn’t all in my head, and it isn’t contagious. It doesn’t turn into anything serious and nobody ever died from Fibromyalgia though they might have wished they could on really awful days. I can’t control how often I feel good or how often I feel terrible. If you want to read articles about Fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that’s fine too.

This is definitely going to be a process. The first step is for you to believe that there is an illness called Fibromyalgia and that I have it. This may sound simple, but when you hear about some of the symptoms I don’t want you to think I’m making this up.
Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There’s no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That’s about the best I can hope for.

Sometimes I can take a lot of medication and still not feel any better. That’s just the way it goes.

There’s no cure for Firbomyalgia, it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I am better, because I suffer from chronic pain and fatigue from which there is no cure. I can have good days, weeks, or even months. But a good morning can suddenly turn into a terrible afternoon.

I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I may get more irritable before these flares, and suddenly get more sensitive to noise, or just collapse from deadening fatigue. Other times there may be no warning, I may just suddenly feel awful. I can’t warn you when this is likely to happen, because there isn’t any way for me to know. Sometimes this is a real disappointment, and I’m sorry.

Fibromyalgics have a different kind of pain that is hard to treat. It’s not caused by inflammation like an injury; it is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it’s jabbing and excruciating. If Eskimos have a hundred words for snow, Fibromyalgics should have them for pain. Sometimes it just hurts all over.

Besides pain we have muscle stiffness, which is worse in the mornings. Sometimes when I get up out of a chair I feel like I’m 90 years old. I may ask you to pull me up. I’m creaky and I’m clumsy. I trip over things no one can see, and I bump into the person I’m walking with and I drop things and spill things because my fingers are stiff or my coordination is off. I just don’t seem to connect the way I should. Hand-eye, foot-eye coordination; it’s all off. I walk slowly up and down the stairs because I’m stiff and I’m afraid I might fall.

Because I feel badly most of the time I am always pushing myself, and sometimes I push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special, but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it’s hard for you to understand why I can do one thing and not another. It’s important for you to believe me, and trust me about this.

My limitations, like my pain and my other symptoms, are invisible but they are there.
Another symptom I have is problems with memory and concentration, which is called fibrofog. Short-term memory is the worst! I am constantly looking for things I have no idea where I put them; I walk into rooms and have no idea why.

Casualties are my keys, which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things I’m still liable to forget them. Don’t worry, this is normal for fibromyalgics – most of us are frightened that we are getting Alzheimer’s.
I mentioned my sensitivities earlier and I need to talk about them again.

It’s more like intolerance – to everything. To noise, especially certain sounds like the television, or shrill noises. To bright lights, to fluorescent lights. To smells like fish or some chemicals, or fragrance or perfume. I also have a problem with heat and with cold. It sounds like I’m never happy but that isn’t it. These things make me physically ill. They stress me out and make my pain worse, and I get exhausted.

Sometimes I just need to get away from something; I just don’t know how to say it. I know that sometimes this means I will have to go outside, or out to the car, or home to sit alone, and that’s really all right. Sometimes when I feel lousy I just want to be by myself. When I’m like this there’s nothing you can do to make me feel better, so it’s just best to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can’t get back to sleep. Other times I fall into bed and feel I could sleep for fourteen hours. I’m sure that’s confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. I am sorry, is there a solution to this you may wish to discuss.
All these symptoms and the chemicals in my brain can make me depressed, as you’d imagine. I get angry and frustrated and I have mood swings. Sometimes I know I’m being unreasonable but I can’t admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I’m in one of my moods, secretly I’m so grateful. I can’t always admit it at the time, but I’m admitting it now.

I have other symptoms like irritable bowel and pelvic pain that will take their toll on our physical intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It is very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you. I will set aside time for us to be close.

During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not show it always I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger.

*I use a stick so people generally ask what I have done to my leg. I then say it's not just my leg, I have a chronic pain disorder that affects all my muscles.

*I must admit I never raise the subject outside of immediate family and some friends. I'm useless at explaining it, but thankfully it's not often it comes up. With family and good friends I can chat with them at ease without fear of being judged.

*I say its like MS but you don't die of it just wish you did sometimes.

*I use the ME approach, more people have heard of it! Also tell them to go look it up as it takes too much energy explaining!

*Well described, although I would never go into so much detail in one go! xx

*I just start by telling people that Fibro makes my life a nightmare and then they start listening.I wrote everything from Fibro down in a little black book,so when I'm to sick to explain I just give them the book to read.In a way its kinda helping people to understand.

*That seems to have been written for someone special - I hope they realise how much effort writing that lengthy and detailed letter was. I think it is excellent and I will take your offer of using your words - though I will change some of the details which are different to mine (though not many). xxx

*It is difficult especially being single and if I am going to date ( it has held me back, my own issue with it, rejection factor etc. Most people don't want to hear about it or others already know .

*I tell them its like a really severe flue with ME and IBS. They seem to understand then and are generally sympathetic and helpful.

*Cowing An analogy one Lupus sufferer uses to illustrate what it's like to be sick http://www.butyoudontlooksick.com/articles/personal-essays/the-spoon-theory-written-by-christine-miserandino/

*I get them drunk, throw them down a flight of stairs and then the next morning I tell them "see, this is how I feel EVERYDAY!!".

*Hi all - I say the same & that it's like MS but not life threatening - because at least people relate to MS - they don't seem to want to know about Fibro - sorry if doesn't make sense bad day 2day, migraines etc.

*I don't bother any more, it is easier to let people think you are lazy!

*I don't unless pushed and then I lie about how bad it is.

*I don't try cause I know they won't get it.

*Look at a beautifully wrapped gift, then imagine it is dropped and what's inside breaks. The gift still looks beautifully wrapped on the outside, but is broken on the inside. We don't look sick on the outside but we are like that broken gift on the inside. That's an invisible illness.

*they would already know what it's about. If they think that I'm lazy and/or crazy, no matter what I say will change their mind so why waste the time?

*Here's my explanation of lack of energy etc
http://kangastu.blogspot.com/2010/02/fuck-spoon-theory-its-for-girls.html

*I tell them it feel like over exercising until all your muscles hurt and then coming down with the flu at the same time.

*No one in my family or friends care or take the time to understand, I am on my own, really hard and makes me so frustrated and angry, if it were them it would be a whole different story. so i just have learned to stay isolated.

*I have sometimes shown them the story of the 'spoon theory'

*wow, I can't believe that I am not the only one who can't be bothered trying to explain it. Sometimes it just takes more effort that it's worth. And you can tell if a person isn't getting it. So much of what you all have said is 'exactly' the way I think. I mentioned a few times (to family) that I budget my limited energy, the way a person might budget with limited funds. There is only so much, and I have to choose what I want to spend it on. And once it's gone - that's it. I'm pretty much done for the day.

*Simply pu, I find it easier to explain by asking folks if they've ever had a true Flu, and if so, that's how this feels, but it never goes away. If they're interested and want to know more I'll mention the plethora of symptoms and always make the point of what an Invisible Illness this is. Funny, if we wore a body cast for the total body misery, there wouldn't be any question as to the validity, eh?

I think your explanation is brilliant, most people don't really want to know or understand. I have a fantastic hubby that does everything he can to make thing's easier, the kid's just think I'm still mum though.

* don't, it isn't possible

*Anyone go into remission of sorts. I was a personal trainer for 6 years. Was okay for 2 had a fall and now its been 2 1/2 years of living hell. Life destroyed. NO support from family or husband but really don't care I have friends that are my support.

*I tend to have real problems with getting anyone to believe I am really ill, My hubby has been really good, taking over most of the jobs I used to do around the house etc. but that makes me feel more guilty sometimes and can get quite angry with myself when he does it wrong or doesn't do it at all.

This also makes my depression worse that so called friends no longer call or visit, I spend days before I talk to anyone other than hubby and kids, and then If I do go to talk to a friend they lose interest very quickly when they realise I haven't cured myself yet.

*Like having toothache, various levels of pain, there all the time,moving from place to place which you have no control over, wearing you down. Imagine that every hour,every day, even at night. Rattle when I move with pills.

*I say it's like arthritis but instead of it effecting your bones it affects your muscles. People seem to understand about arthritis so it's an easy way to make them understand.