Hello everyone

[BikerDanny]

hi, I am currently going through the motions after my diagnosis with lupus and i am finding it hard to get people to understand my condition, its been 15 years since I started with my symptoms and its has had a detrimental impact on my life and my mental health, the fatigue and the amount of sleep I need to function has made things very difficult but others have just seen it as chronic laziness and that's the brush I have been tarred with most of my life now.

[MrsMarigold]

Welcome to the forum BikerDanny. I’m sorry you have this disease. I think everyone on this forum can relate to your dilemma. Family and friends, people we believe are our allies through thick and thin can not understand our illness. Many have never heard of it. It is a hard pill to swallow when you feel rejected from your own community of support because they fatigue has the appearance of laziness and unwillingness to live life. You are not alone.

It will get better. You are not yet being treated with medication and a health plan yet. When you get those you will begin to feel better and live your life better. Lupus won’t just go away; but I believe your confidence about how to inform your support system people will be easier for you. There is a series of easy read books by Kimberly Rae that helped me and many others on this issue. Best, Titters

[CecilyParsley]

Hi Danny, I think everyone here will identify with your situation. Sadly any invisible illness is difficult for healthy people to comprehend. The well meant advice…get some fresh air / lose weight/ think positive/ make an effort/ get some exercise/ go to bed earlier/ …and you will feel better really isolates and depresses.You certainly find out who your friends are and those who make the effort to read up and understand. This place is a God send to chat to people who know ,understand and support. It will get better. Take care of yourself , listen to your body and rest when you need to x

[Whitemagnum]

Hello BikerDanny, I know just how you feel. Please take heart that it does get easier as family and friends start to become more informed about the nature of the disease. You can maybe pick up some leaflets when you attend hospital for your lupus apmt? Or maybe join "Lupus UK" and get your loved ones to read the magazine too? It's so hard for anyone who doesn't actually have the disease themselves to comprehend what we go through on a daily basis+ that's why it's important to reach out on here to fellow sufferers so we can support each other so please use this forum as much as you need to. There might also be a Lupus group in your area so you could maybe join that? Don't lose hope, I know what it feels like to be seen as lazy and then you start thinking that you are just lazy+ not making enough of an effort but it is the Lupus and you are not any of these things, you are suffering from an incurable, auto-immune disease which can attack every organ of your body and of course it will take you some time to get your head around this. Your family and friends will also need time to begin to understand but hopefully leaflets,some simple books which Lupus UK + others produce+ information on the NHS website will all help them to grasp what you are going through+ also what you have gone through for the past 15 years. there is help and support out here for you so reach out as much as you need to. Wishing you all the best.

[JenniferW]

Hi Danny,

I find the spoons explanation quite useful, you wake up each day with a certain number of spoons, meaning amount of energy. Some days it's more and some days it's less, but we don't have any control over how many. Every activity uses up some spoons, including activities like having a shower. If you try to use more than your allotted number for the day then you have to pay them back double over the following days. Like borrowing at 100% interest per day

There's probably a more elegant way of putting on here somewhere.

Jennifer

[MrsDarbyshire]

Hi Danny, to add to what Jennifer has said about the spoons theory... When explaining to anyone about this theory, don't forget when explaining what exactly this is, that a healthy person may have double the amount of spoons to spend every day when they wake up, and that where it may take that person 1/2 a spoon to get out of bed, take a shower and dress, for you, it could take 1 or 2, leaving you with less spoons than them. Everything you do, from getting out of bed, to climbing back into it costs spoons! And some times much more than the healthy person would use.

It's really hard. It took me a long time to even get my hubby to understand, until I came here and read about this theory. Now I use it all the time.

Also, if you feel able, don't just explain the theory. Tell them how frustrated you are at the fact you feel that no one gets it, how it is affecting your mentle health.

They can't help you, if they don't understand.

Show them this thread. Find some info on the net, and read it with them. I found asking people to look up the info for them selves not helpful. Do it together.

Sending you big hugs! Because we all need one from time to time especially when we are struggling.

Take care 🙂

[MusicalFurbaby]

Hey BikerDanny, first of all, well done for posting here. We get what it’s like to live with insufferable fatigue and other symptoms, and we will never accuse you of laziness! Many of us share that experience—being perceived as lazy—so we can empathise with your situation.

I’ve used quite a few metaphors to try and explain the fatigue to doctors and loved ones, including the spoons theory, wading through mental quicksand, feeling like I’ve run a marathon, feeling like I’ve just finished my work day instead of just starting it, living on a depleted battery, feeling like a mum with a newborn (I’ve never had children, but most people have and can relate to this), and feeling like weights are attached to every bone in my body. Sometimes these metaphors help—but some people simply will not understand, no matter what you say.

With covid fatigue and long covid becoming more common, people should be able to understand the concept of chronic fatigue a bit better—hopefully! In the meantime, look after yourself (even at the risk of being called lazy yet again), and feel free to post here as much as needed. We understand what you are going through and how isolating it can be. You are not alone. 🌻