How many of you have heard this? "Yes, but everybody gets tired....."

Has anyone found a good way to explain lupus exhaustion to someone who doesn't know what it feels like?

[crankyme]

Not yet, I gave my inlaws as many leaflets etc as i could find and said in order to understand why I am always looking and feeling tired to read about the illness and now it is not commented on as much and they now ask me if i need any help.

I think sometimes people can look upon a person with an auto immune desease as if they are lazy or uninterested dont you think?

[Hidden in reply to crankyme]

Sadly yes I do agree - we mostly look very healthy and people seem to think if you're ill there should be some outward sign of that. Leaflets are a great idea and it's nice that they actually took the time to read them, some people can't even be bothered to do that! :o(

[Lupylass]

When I was initially trying to convince doctors that my fatigue was out if the ordinary I compared it to when I previously did adventure racing. I used to do 4 hours of hard training on a Saturday and get to the stage where I could just lie down on the ground (whilst out training) and go to sleep, or at least that's oh I felt!

My lupus fatigue felt just like that except I didn't do the training. I could just be going for a gently dog walk and have an overwhelming desire to just lie down and sleep, and genuinely felt that I could sleep on the spot.

[Lupylass in reply to Lupylass]

I should add that this explanation worked!

[Hidden in reply to Lupylass]

Great - the more explanations we have the better then maybe at last people will understand a bit at least....

[Franziska]

I never used to advertise the fact that I have lupus, mainly because I was worried how people would react and also because I'm not one to whinge. It's rare that I complain about my lupus and how shitty I feel, simply because there are always people out there who are a lot worse off than I am. And let's be honest, people don't really want to hear how bad you feel. But if I do get asked about Lupus then I usually say that the constant fight of my body with the antibodies that attack me leaves me extremely exhausted and worn out and unless the other person has a similar antibody army in their system there is simply no comparison. There is tiredness and there is tiredness ...

[Dizz510]

I use the "spoon" theories story. Makes them understand

[Hidden in reply to Dizz510]

Yep - always a good one! I print it off and use it at awareness days......

[Purpletop]

I don't think that however well we can explain it, people who have never experienced this fatigue would understand it properly. A healthy person assesses the world around him/her by his/her own experience, so how could he/she grasp the concept unless they've experienced it.

[uniqueflo]

i best describe it as being steam rollered and having all my muscles filled with lead!!everything becomes so heavy and takes such an effort to move,that i cave in and stay on the bed.iv found after 7 years living with lupus Sle,APS,MCTD,raynaurds and diabetes with 2 prolapsed discs and spinal stenosis!-you really have to listen to what your body tells you,and act as soon as you feel a slight decline,which can fend off a full blown flare.having a good team of Drs is essential.

[Hidden in reply to uniqueflo]

Very wise advice, better to act early for sure as it can turn so quickly!

[Ruthwenthome]

I tend to compare it to walking through treacle with lead boots on, or sometimes complain about the toothache in my elbows or knees

[Willow]

i don't think there is a good way until the whole of the medical profession recognises the true impact Sle can have. I wanted to stop work at 57 due to health issues and take my company pension - having paid in for nearly 40 years. The company doctors opening words were " so you have lethargy" . I was refused retirement on health grounds as he felt on a balance of probability I could get better. It's a joke.