This is a difficult one. What I have found works best is first of all prefacing everything with 'my doctor says' to give it some authority, and then explaining that you have to take it very slowly, that pushing you will make it worse, and that you've been told that you are the best judge of what your body can do (which is what my doctor told me).

Don't expect too much from people. Definitely set boundaries on how it is appropriate to behave around you, ie no pushing or shaming etc. Put it in very simple terms, tell them it can be managed and you can gradually improve but you will need their support. It is common for family members to be just awful about this condition....they may or may not understand, which can be very upsetting, but at least if they are not hindering or upsetting you it's something.

Hi, Annie. I agree with Lupin, that this is very hard. My grandpa used to say, "Don't hold your breath waiting for others to understand you." I do think that saying that your doctor said something does hold more weight, but there will still be some doubters. Hopefully the people who are closest to you will see the reality of your daily struggles. It is so hard for people to understand how you can look OK and feel terrible. But we understand. You are always welcome to post here and we will "get it." Many blessings to you.

I think it is also important to pick your people. I have a close friend; we have known each other for years. She simply doesn't/won't understand. I might say "this is a bad day, I am so tired" She will always say she is tired too. She translates each symptom into a "normal": so my 'tired' is the same as her 'tired'. She has also said "you could work if you want to." It drove me crazy. I tried harder to explain, more information. Not good. Then I realized she won't ever understand. So I stopped trying to tell her things, to explain it to her. We get along better now.

I've posted this before in a comment, so feel free to skip it, but this is how I've tried to explain tired to my family and friends.

They dont understand, but how can they?
I tell them that I am tired all of the time
and they imagine the tired they know
Its a tired that ends.
Their tired starts with a lack of sleep
or busy-ness or hard work.
There is something out there causing it
something which can be pointed to,
understood.
They know the cause and the cure.

Circumstances might trap them and they
fight on through the barrier,
endure.
Its hard, wearying, a tough grind
which can shred your nerves
make you want to cry.
I remember that kind of tired
I yearn for it.

I have fond memories of muscles
worked to their limits,
Of being tired and knowing there was
a job well done.

There are less fond memories of all night
at a hospital, worrying,
And the day which followed and had to
be faced despite lack of sleep.
I also remember illness that left me drained,
too wrung out to care about anything
but resting.
Even depression has touched me,
dragged me down,
made me feel useless.

Yet now I would welcome those fatigues
all but the last.
It hovers too close, ready to take me again
should I cease to fight it.
And fight it I must, constantly,
because the others are gone.

I no longer have the job well done,
nor satisfaction in accomplishment.
Now a joyless triumph is getting the laundry done,
or the dishes, before sinking into exhaustion.
It used to be that to read a book was to rest.
Now it is a task so often beyond me.

One of my greatest joys has always been
to create, to produce: food, craft, words,
a recreation to build me up.
I no longer have the energy for that,
even in the most basic form, for days on end,
sometimes weeks.

All too often I cannot drive, my mind too much
of a fog, my concentration gone.
Nor can I enjoy the simple things:
a walk along the beach,
a lunch with friends.

So I am trapped alone with the little I can do,
computer and phone linking me
to the outside word.
Television and video save my sanity
for the most part.
When days turn to weeks and months pass
a solid diet of nothing more palls.
I was not designed to simply sit by,
turn off my brain and vegetate.

Then there are my bad days, when I
cannot achieve anything
cannot create, cannot read
nor even watch.
My brain will not hold thoughts,
my body too tired to move.
My limbs may as well be lead,
the fatigue so bad that it
almost hurts.
And there is no relief because neither can I sleep.
To surrender to gentle slumber
would be bliss.
Oh, I dont not sit up into the night, tired but
wakeful in the darkness,
frustrated.
At least, not often.
No, I sleep easily nine hours a night,
quite often more
and wake unrefreshed.
My body clock says time to rise and will not
be ignored, so I obey.
And face the day exhausted but not sleepy
condemned to wakefulness.

Yet some things have to be done.
I prepare breakfast, eat it
and then rest.
I force myself into the shower,
struggle through washing
sway with fatigue as I dry
and then rest.
Shopping for one does not weigh a lot
but a supermarket is a long trudge.
Its harder to push myself than the trolley
at least it provides support,
something to lean on.

I put it off as long as I can but the time comes
when it can no longer be delayed.
And each time I pay the price for pushing on
for days after.
Muscles burn from the smallest effort
my head swims, wont remember,
thickly hurts.
My breath grows short, it is hard to
balance well enough to stay upright.
And I must rest a few hours or a few days
before I can venture out again.

Yet none of it really shows,
other than in my slowness.
When I meet people, I talk to them,
smile and sometimes laugh.
To do less would be to give up, fall back
into the pit of depression
to fail.
Most get my standard reply, Oh, not too bad,
after all, if I was bad, I wouldnt be there
but at home, resting.
To a few I know well and trust, I tell the truth,
Tired.
So much in one small word.
They encourage me, wish me well
but they dont understand.
They think that with rest I will recover
after all, they do.

Even those who come closest get it wrong
Just do what you can, they recommend,
gradually build up.
Thats when I feel like crying again.
The basics they barely notice are beyond me.
Already I do more than I can.

Like today.
The pressure built up too much, the frustration
had to be released.
So I put down the words.
Now its time to pay the price
and rest.

Annie, I am sorry to say that I have never really found an answer to that question. I used to talk & explain & became so frustrated because I was always wanting to find people who understood me. I finally just gave up & worked hard to be okay with who I am. I started just saying either today is a good day or today is not a good day, I left it at that. I did have a friend who seemed to get it & I appreciated that. My family was another story but after 10 years of me not being able to go to all of the family functions, in fact, very few of them, they have toned it down & I don't hear how I need to exercise more, I'm depressed & need to get out or since I live in an older home it is probably the house that is making me sick. I will say that coming to DS has helped me a lot to connect with people who do understand me & I feel very close to them. It is so validating to hear how someone else is going through what I go through. Your question made me stop & think of how hard that was & I had felt so alone going through it, but there are people out there who "get it". Hugs, Denise

I don't talk to friends or family about the way I feel, I just say "fine" when they ask "how are you" or "I don't feel good enough to do....".

Most already know I have something wrong with me but then they forget. I do have some friends and family who truly express an interest in my condition and I tell them I need to get horizontal frequently and cardio worsens my condition and other things.

I have encountered people who think my "tired" is like their "tired" and I just let them think that. It used to make me mad but now it doesn't.

Maybe I got this way from running into too much advice giving people who don't understand. If someone gives me unsolicited advice I say something like "been there, done that, I've done it all".

Are you feeling left out because you can't do anything at all, even with pacing? If I have something to go to then I rest before and after and while there I am OK. But I have been so sick I couldn't do anything and if so just rest.

It seems nobody but CFSers can really understand. So I talk to CFS friends about the intricate stuff to do with this illness. My girlfriend with diabetes, I don't really understand all about her situation so it's probably the same deal.

Most people close to me know I need to lie down... a lot. I tell people I have fibromyalgia and leave it at that. Hugs and support as you find your way through this x

i tell people it's kinda like having MS. Everyone knows what MS is, in fact my Neurologist first thought was what I had.

Have you ever read "The Spoon Theory"? It was written by a someone with Lupus but when you read it you will see how it can be relevant for anyone with CFS as well. You can just google it.

I have really wasted my breath trying to explain, not only to family but to doctors as well.

Hi Annie, I'm so sorry you're going through this. I've had CFS since 1997 and unfortunately, I don't have a person I could talk to about my condition and explain how I feel. My friends and family don't understand. Only my mom understood, but she's gone :( Even my husband doesn't want to hear about it and he thinks it depends on me how I feel and that I choose to feel tired and sick. It's sooo frustrating. I don't try to explain anymore. I realize that I only waste my energy (and I don't have it much). I feel so alone sometimes. Hugs to you!

I describe it like this:
Do you know how you feel that morning when you wake up and say to yourself "oh no, I think I've caught the flu". You feel exhausted and stiff. Your head is pounding and your throat is sore... and everything around you is too loud and moving too quickly and you just want to go back to bed and pull the covers over. Well imagine that you feel that way every day. Some days I plow through but some days I can't go a step further.

I was able to find a local support group which met at a
hospital when I first got this. It was invaluable. I don't know if
you're able to drive/and or get out. You might also consider
starting one. Ours was for auto immune illnesses and I was
very surprised at how many people showed up.
I didn't loose alot of friends because I didn't really have
that many. I actually made more friends after I started going to
the group. How strange is that??
Trying to get others to 'understand' can be difficult. I can
relate very well to the posts here. There have been times
when I've felt like just making up 'some other illness'.
Like acute diabetes, or a rare genetic blood disorder.
Because I feel the word 'fatigue' is very nebulous as
is 'chronic'. Something with a more 'concrete or visual
definition' that would work better. But, of coarse I haven't
done this.

Southbound, I love your description. I've used it several times myself. Also, I find that people respond to analogies, so here's the one I use:

My body (with CFS) is like a used car that can't go over 30 miles an hour. It will allow me to drive to work, do errands and get me around the neighborhood, but if I speed (over-exert myself), am on the road too long (don't get enough rest) or have a fender bender (anything that causes mild-moderate stress), my jalopy will be out of commision for who knows how long.

Since I need my "car" (my body and some energy) it's a priority to me. I can't ever trade up to a new car (get a new body), so I have to make do with the one I have, and I have to follow a tedious maintenance plan.

It's kind of like that movie, Speed, except people with CFS are the opposite: We break down when we EXCEED a low speed limit.

I don't like talking to ignorant people about my CFS anymore than I like telling them that I homeschooled my daughter. They always disappoint me with their know it all comments when they have no clue about what they are talking about. My husband and daughter understand and that is enough for me. If I feel I have to say something I just say I have health problems without giving it a name. My dad will say I need to exercise more and I always have to reexplain that it doesn't work that way. It feels bad not to share with people you are close to, but it can feel worse to share and not get a good response.

The last decade, I've been using Xyrem, (sodium oxybate) to get the deep sleep we don't get on our own. This has helped with the stiffness and I now have some energy, limited. People do seem to think that they have the solution. I blame it on being mothers, when we solved everything. I had to walk today. Just from the end of the parking lot to the comm.center I go to twice a week. To me, that's a hike! and my hips are hurting now that I'm back in bed.

The people who live with me, husband and adult dtr., do know what's going on and are helpful up to a point. They are also, aging, and sometimes fatigued. I have to remind myself to respond to this, to vocally agree that they, too, have problems. (to me, it's a tiny 10% of what I have.)

Son has seen me like this for years and knows I am trying to have some quality of life. He pays for my weekly pilates class. Which is so nice of him. He tells me he's grateful that I am willing to go. Truth to tell, most days I'd rather stay in bed.

My friends have receded over the years. Only one comes to visit once a week and offers to walk, but doesn't nag. Some days I use a cane. My weight is way up b/c of the meds, (Lyrica), and all the resting. I eat so little......wish I hadn't gained the lbs. but the neuropathy I have in my feet was killing me. Lyrica has really helped with this, and I'm grateful. Just makes me more fatigued.

When someone wants to know about fibro, I tell them not to worry, the drs. don't even understand it. I leave it at that. Just one woman, my bible teacher, (once a week) keeps trying to sell me her naturapathic stuff. It's rude that she doesn't give up. I listened to her on two occasions and suffered, greatly. Burning mouth, for one. Bronchitis for the other. We are too complicated, at least our illness is, to leave to amateurs.

It is good to come here, and I've recommended it to my drs. who tell me that their patients are enthused about DS. Good for us.