One of my best friends got drunk one night and told me she was going to tell me something that I wouldn't like to hear. She went on to say that she thinks I make it up half the time, re my fatigue because half the time when she sees me I'm fine. She said she thinks I just say it to get out of doing things or because I'm feeling sorry for myself! Also she said she doesn't believe the anxiety I suffer from and she said that it's all in my head. We went round and round in circles because I said of course its in my head, the anxiety is a mental health condition (I get panic attacks) and I wasn't winning, so I left in tears telling her that for a very intelligent person, she was making very un-intelligent comments. I actually said I down play a lot of what I go through on a daily basis and if she lived with me then maybe she might understand exactly how tough each and every day was. She was sorry the next day but we have kind of swept it under the carpet as drunken chat but I can't forget how awful she has made me feel. If one of your closest friends thinks that, what does everyone else think? Going to work every day is tough enough coz you know people are just thinking you are making it up. It's so hard 
My friend got drunk and told me that she thinks I... - LUPUS UK
My friend got drunk and told me that she thinks I just make it all up .. the fatigue, etc ..
Singlemumloopy
First of all, I'm speechless. Deep breath.
That must have been very, very hurtful. Being drunk isn't an excuse for what she said. True friends offer unconditional support. They might not understand what we are feeling or going through, after all, without suffering like we have then how could they understand? But regardless, they should at least be able to empathise and offer support and make allowances.
When I was first going through diagnosis and trying to get treatments to work, and finding a lifestyle that would work for me, I had to give up things I previously participated in. Triathlon, running, adventure racing, mountain biking, going out to lots of gigs. A couple of 'friends' dropped me because our shared interests stopped. Other friends are still there and we do different things together. These days I do less and don't organise so much. I worry less about being selfish. True friends will understand. Others who don't can go. I don't need the grief.
Have you read the spoon theory? It's quite a good way of explaining fatigue to others.
Don't let this incident get you down too much if you can. Other friends and colleagues will admire your resolve and will see your battle with your pain, fatigue or whatever battle it is you're having on any given day. There are times I bet that you would rather curl up and stay in bed but you get up and get on with it. And of course there are days when you must listen to your body and rest. People will understand that. At the end of the day you have to do what is right for you, and not worry about what people think. True friends will understand.
Lupus uk also have leaflets that you can give to people. Some people might read them.
I hope I've helped in some small way. You didn't deserve to be spoken to like that. Let her read the replies you get on here!! That might make her think?
Great advice!
Singlemumloopy, I can totally identify with lupylass's reply, and would add: my local lupus uk support group has helped me make friends who do understand truly madly deeply...as has this forum. Once I felt that support, I found it much easier to keep calm & carry on the way lupylass is describing
I also had so called friends who dropped me when I did not......could not....due to the medication I was on...go on nights out drinking with them. They did not believe how bad I was I always make an effort an look well ......I was very hurt but as long as I have my family am ok ...good luck .
Hi Single,
Very hard situation. Maybe you can find a support group to attend and take your friend so she hears others especially since this is a long time friend and probably an important aspect in your life. If this person regularly does not uplift you (no matter the topic), it's time to consider giving her a smaller role in your life.
Even if you were making it up this up in your head and there weren't countless online resources to validate that others feel like you, there is a reason you would be doing this and your friend should be trying to help you!
I had a close and important person in my life be unsupportive and even a bit nasty. Fortunately, we worked through that and compassion was found.
I also had a boss who was pushing my workload to 12 hours a day. When I said it was affecting my health and explained why, she told me I looked fine and didn't look sick. She never bothered to research in on her own, just sizing me up by how I looked. I was fortunately able to leave that situation.
Hoping your friend truly becomes more understanding and you start finding support through other means (like this website!).
In support,
Calafia
I am on holiday with my friends at the minute and I think it has been an eye opener to them how exhausted I can get completely out of the blue. I lay down for a quick nap during the week and didn't surface for two hours and looked deathly white. I was away with the same group of friends last year and I'm shocked by how much my energy has decreased - and I go running and use the gym!
Fatigue is horrible enough when you have supportive friends and allies. I am so sorry your friend was so insensitive and ununderstanding. At least here people will believe you when you say you feel tired, achy, confused etc. I hope you can get some help.
I actually prefer people telling me what they really think rather than telling me a load of platitudes they don't believe in. Having said that, her views don't strike me as belonging to a very empathic person.
Since I've been diagnosed I've realised that not many people understand what we are going through and how could they? In trusting people, we don't only rely on what they tell us but on our own observations of what they go through. We also tend to believe our own observations above everyone else's, so it is understandable that when the way someone looks clashes with the way that person says he/she feels, we will believe what we see first.
Try not to get yourself wound up by this - as long as YOU know what you're going through, everyone else's view (save for your doctor's) becomes less relevant.
So sorry that you've experienced this and from a best friend too! Unfortunately this disease is very good at hiding its true pain for the sufferer and we sometimes don't do ourselves any favours by masking how we really feel. Perhaps giving her an information leaflet or showing her this forum might educate her?
I can empathise with you and although no one has said anything to me, I often feel like a charlatan on the outside but know that inside I am managing severe pain and fatigue. Another person on this forum once described the fatigue as having the worst flu imaginable...good description! Hope you get your relationship back on track. Xxx
Hi Singlemumloopy
So sorry again this time getting painful comments from your best friend. I'd say it was the drink talking, how has your friend been since?. I'd keep a watching brief on her and if she still doesn't understand and it can be hard for people to if they've got good health, then it might be time to say the friendship has come to an end or downgrade it. I've lost friendships since being ill but have made new ones too sometimes from surprising areas so it's a time of adjustment. You definitely don't deserve to be spoken to like that with all that you are coping with, encouragement would have been much nicer!. Keep some Lupus bookmarks in your bag , I find they're a great way to explain the illness to people and they get something useful they can keep!.
Take CareX
Well said!
And, Singlemumloopy, I'd add:
I've been rethinking & readjusting to my existing long term friendships since diagnosis 3+ years ago....and it's taken that long for me to feel I've given some people a good enough chance to get the hang of what I've been. & am living with, + the fact that I'm not just a hypochondriac....oddly enough, several of these old friends have been living with chronic illnesses for decades. I'm very fond of them, but because they continue to discount the reality of my health challenges while I've never failed to support theirs, I see less of them....but even so, when I am in touch with them, I try to be supportive & consistent in my friendship....I tell myself they are basically in denial about me, and so preoccupied with the long term daily struggle of their own health issues, that they're simply unable to adjust to the full reality & implications of my health story being unveiled after so many years...
Trying to be self aware, I admit that I do feel this dynamic is partly my fault for laughing off all my health probs (even when an inpatient) and giving them the impression I was coping better than I actually was over the years...(but I'm not suggesting you've been doing this too!).
On the other hand, these particular friends seem unable to understand the relapsing & remitting multisystem character of systemic lupus, and its progressive nature.... It turns out that most recently they've been assuming that because the treatment plan my drs have been developing over the past 3+ years is finally really helping me, I'm all better & "In Remission"...I try not to feel exasperated...they've had the excellent lupus uk info leaflets for friends & family...they've watched me cope for years...this lack of understanding is their problem, not mine...
Thanks for starting this great discussion...it's helped me a lot!
For 1 thing if she's really your friend she shouldn't be judging you, 2 she doesn't live your life or walk in your shoes so how would she know.
I know exactly how you feel I also duffer from serious anxiety, and OCD. I was diagnosed in April, and now have shingles. My only support is my husband he sees what I go thru daily.
Your friend needs to get info on lupus, and be more supportive for you.
Just an opinion.
That brings tears to my eyes. I'm really sorry for you, that must have felt terrible.
I hope you have some other support who can offer you the care and grounding you need.
I wish there was an easy response but I have found that if people cant see an illness they wont accept it, until it happens to them. At least you know how she feels which to be honest I find so do many others feel the same. It is your life, you are the one who suffers so dont play it down anymore. If you are tired,sore or feeling ill just accept that is how you feel and dont worry about what is said. Its pure ignorance. Look after yourself. You are number one here. I actually have turned down invites purely as a precaution as friends had a cold and with being on immunesuppressants too worried to catch it to. My friends didnt understand but I figure Im the one who will get beyond sick not even worth a discussion anymore. Yku have plenty of friends here!
I have found that the spoon theory really really works when explaining to people, especially the visual ones that you can find online .
If I'm feeling particularly bad those are the days people say I look well because i put on eyeliner and mascara as my mask.
Please look at the spoon theory and see what you think (if you do not already know of it) x
I've got a friend who's pretty much the same, luckily for me I only see her a few times a year so don't have to put up with her small mindedness too often, I have told another person on this site to watch a video on YouTube called the spoon theory it may be worth playing it for your friend as well so she can understand your daily struggles lupus is pretty much a silent illness where as on the outside you look fine but on the inside it's indescribable how tiring trying to fight this illness is - I hope this helps you but it is surprising how many people have this view
I am continually being told how well I look, even on days when I am struggling with fatigue. I just say 'thanks' now rather than 'really? I feel like crap' . I will reiterate what others have said; people believe what they see. I found myself showing my colleagues the vascular rash on my legs as it's the only overt sign that something isn't right. Why should we have to justify ourselves like that? If we had MS, people would be sympathetic even if there were no outward signs of the disease. And herein lies the answer. Most people know about MS, with lupus it's about ignorance of the condition. It's not their fault. I never used to know the distinction between arthritis and rheumatoid arthritis, now I do, but only because I've researched it. In summary and to use reference to a biblical quote (even though I'm not religious); 'forgive them for they know not what they do'. Hope you feel more confident now about holding your head up and knowing within that you are genuine .
People are so cruel my daughter list 5 of her 8 friends who were saying the same things to her if they only really knew like you she is so brave living with thee conditions I don't know how she does it day in and day out! Mayb get some Lupus UK leaflets there is one on the affects on the brain which includes anxiety and some of the other ones and give them to her hopefully she is descent enough to read the appropriate literature! If not find a new friend!! Good luck
Omg. If that's what your friends say, I'd hate to hear what your enemies say. What a horrible thing
Most cases of chronic fatigue syndrome, as well as a variety of sleep disorders like sleep apnea, are caused by vitamin D deficiency - check the Vitamin D Council website or my own website for further information:
Regards, Anthroprof
P.S. don't take your friend's comments seriously - You do not need anyone else to pronounce your life worthy.
This is so sad
Spoke to my dad on the phone 1 night and he said that he didn't really know much about SLE (had it for 10 yrs , single mum 3 kids) so I sent him the link for the spoon theory ,,,, saying can you take 10 mins to watch this ( I know , he would 1 not watch it or 2 stat watching it , then give up !)
Well I got this huge horrible message back ( yes he hadn't watched it,, only seen the 10 mins bit)
The end of the message was " and how long did you look after your mum , ,,,,mmmm 10 mins ) (she had MS)
I cried for hrs ,, I only wanted him to understand ( have SLE , fibromyalgia , brain lesions , osteoarthritis ) and my youngest is only just turned 12
i feel for you, I too have learnt to remove some of my friends from my life who were continuously making snidely comments that they didn't believe I was poorly. I admit it was hard at first as I thought we were good friends; I had always been there with advise and a helping hand when ever they needed me. yet when I became very ill they disappeared. maybe distance yourself from her for a while, please don't take what she said to heart. hugs x
Thank you all so much for your support and kindness. I hope this post has really helped others too, your messages have truely uplifted me. To be honest, i havent had either the guts or energy to confront her about it. I hate confrontations. Would make me stressed. So Ive been quietly observing her behaviour and devided i do not like some of it. Ive been in denial a bit because shes been such a good friend for years. But since that day, I haven't been able to forget, and so i keep her gently at a distance now. She has felt the change but i feel she's too sheepish to raise it, so there we are. So many comments from these posts keep me strong. Thank you xxx big hugs xx
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