I was just wondering what peoples attitudes are towards you and your illness. Have you found friends / family to be supportive or have you had many negative reactions?
As some of you may have read in my previous posts, I have recently been on holiday in Ibiza. My gp still thinks there may be something autoimmume going on but at the moment I'm diagnosed with possible post viral / chronic fatigue syndrome and I've been told to pace it. I'm ok with that and am happy to pace it.
However, on my holidays my friends boyfriend kept asking why I wasn't going to a club until 7am!?! He said I'm just an old granny! And then last night, bearing in mind I had to catch a flight at 3am this morning, I was dragged round Ibiza because my other friend wanted to meet some guy in a bar and the others wanted to go so it was either that or stay in the hotel by myself, so I went but I just felt so exhausted! My friends boyfriend then decided to shout at me in the club asking how on earth I could be THAT shattered etc etc. I just felt SO horrible (didn't cry though)!
I just felt that my friend and boyfriend just got sick of me being exhausted and in the end I couldn't wait to get home. My friend had even said before we went that she thought she also had pvs a while back, but that in the end it was a mental thing, and she needed therapy and to just get on with things! So basically they think it is all in my head and therefore I think they thought if they could drag me out in ibiza I'd snap out of it.
Luckily, these are the only people that have been strange about this. I have no idea why but it has made me really consider our friendships.
Just wanted to rant and also see if anyone else has had similar experiences?
Lots of love
Written by
natal1a
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22 Replies
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I've only had one friend treat me that way. they are no longer my friend. friends are supportive and except you warts and all. personally i would ditch them. you will be happier and better off without then. chronic illness does make you realise what your priorities are. if you havelimited energy why would you waste such a precious commodity on somepeople who dont appreciate what a gift your time and energy are.
Your friends boyfriend sounds like a bully. Having said that, even some family members can be very unsympathetic. My brother and sister couldn't care less when i was diagnosed with lupus even though our late sister had it. Needless to say i have nothing to do with them, i have my own family and i am better off without them.
Some autoimmune diseases like lupus are very much hidden diseases. People don't always believe that your really ill. As tatty says, if they are not supportive then they are not worth bothering about.
So sorry to hear that you had to put up with that on your holiday but well done you for going!
I have not been diagnosed yet, been having symptoms well over a year now. But have to say I have already stopped talking to a close friend about how I feel as I feel she does not care, even though she was recently tested for Huntingdons disease (as her mother has it and there is a 50/50 chance it passes to children) and I was there supporting her all the way through. I text her everyday in the lead up to the results and I went to hers on the day of the results to support her. Luckily she tested negative for it, but I have not seen the same level of support back for what I am going through. She took the time to research lupus and its symptoms and said to me it sounds awful but yet does not give me any support!! My mam and dad have both been supportive, I think this is due to my late auntie having it. My partner can be supportive but he finds it hard to show as he hates seeing me in pain so he avoids talking tk me about it which I find hard as I would really love his shoulder to cry on when I am hurting! Tbh I just feel nobody understands how we feel. I look at myself in he mirror and think 'how can I look so healthy on the outside when I hurt so much on the inside'. It is tough but think you just need to avoid having people in your life who do not believe or support you. Especially this friend and her boyfriend! You dont need people making you feel bad when you feel bad enough! Hugs to you xxx
my friends and family are okay with my lupus, i find its employers, dwp, training centres.
In the last month ive been slandered, that im not sick, i dont want a job, im using my health issues to hide behind, and even lupus is not an illness. im sick of these attitudes by now so ive written a letter to my doctor. I never asked for this disease, it was passed on from my mother to both me and my sister.
It would be easy for me to say dump the friend and bfriend but that wouldn't be easy for you - I know how you feel first hand. My story is that I suffer from terrible depression when I have a flare and at one point I was having suicidal thoughts (not nice), I asked my partner to help, asked him just to sit with me etc. at this cruical time he took a call from his parents and told me he needed to travel the next day to meet them. Well, I lost it completley!! I needed support, I needed help and here was my loved one telling me he was leaving for two days!!! We did manage to sort through this but it's left a big scar in our three year relationship.
I firmly believe that unless anyone had actually been through a similar experience to the one your are experiencing that they will never fully understand how you feel.
You have my full understanding and I'm sorry that you had to go through this. Did you talk to them both about how you feel/felt at the time??
It's psychologically easier for fit and healthy people to write off the chronically ill as malingerers for, if they accept you have been stricken with something really nasty out of the blue, they'd have to accept the possibility it might happen to them too and it's far too scarey. It's a form of denial and their problem, not yours. True friends will try to understand and support you.
The only person who really understands me is my mom - she however sometimes gets snappy with me as I don't have enough energy. My husband thinks my problems are all in my head, although I've been diagnosed. His family always ask why I haven't got a job and why we haven't got children. It is a nightmare! I think my husband would like a divorce really but don't he could afford it - he has said some very hurtful things to me. I just try to live every day the best I can. I think the chronically ill have to be mentally strong to deal with all the well but ignorant people. I do hope that your illness subsides and that you can enjoy good health again. Ignore them, they really aren't worth it and will just drain you of your energy.
Only the friends that have their own health problems, show some understanding of.what daily life is like & the unpredictability of it. Others (most) have distanced themselves from me & it took a lot of energy before I came to understand its THEIR mentality at fault for that. Am I alone in having friends/ family whos mindset is "Im so much more sick than you are so you dont matter." As for colleagues & bosses, seriously, dont get me started!!! (Stresses on previous posts - my old boss has quit so hopefully things might improve there!?)
Thank you all for your responses. It's so sad to hear so many stories about how people have been treated. Unfortunately it seems all too common. Weirdly I feel some kind of relief at my friends boyfriends outburst, as they had been funny with me for a while, so now I actually know their opinion I actually feel weirdly better. Luckily I have plenty more friends that are supportive otherwise I don't know what I'd do. I just pray that these ignorant people never have to go through any similar experiences to us. It's so funny how you go through life thinking you have really good friends until something like this tests it. My other friend who I was on holiday with wasn't much better. She made us all go out on Friday (on the way to the airport for a night flight), to meet a random guy she's never properly met before. She said she was happy for me not to go and that I could have waited at the hotel. On my own. Wow what a great choice hey the thing is, I don't want the world to stop for me so I hope nobody thinks that's the case. I understand my friends still want to go out etc, but i didn't think I was being unreasonable this time. Got a weekend in Edinburgh this weekend with much lovelier people
Let's hope peoples opinions of these illnesses change soon!!!!
I too have had so many people family and freinds alike who totally did not understand
Even the ones who think they do, will latch on to something positive I say, such as if I say "now my treatment is more effective" they think this means I am going to "get better". I would like to assure you as you continue to deal with this and assert yourself your confidence and self knowledge will grow, and you won't mind so much what people think, because you believe in yourself. Accept yourself, and find others who accept you, all will be well, even with illness.
However, some people are nasty or make on they don't believe you have a illness, because they are scared of it. Being scared, they try to ignore or deny it.
It would be very easy to dismiss you friends boyfriend as just a bit of w*nker, but that would be a tiny bit unfair.
I find that people want a clear sick/well situation and lupus is as far from that as you can get -as you well know.
In general when you have name for you ills it is easiear for others to accept, even if this means you answer everything with - its the lupus. or sorry, I have lupus.
My family found it difficult to grasp especially as like so many of us, I had been very active and I dont look particularly ill. And like so many of us, I do try to keep going.
When, after 15 years I finally got a firm diagnosis, I got them together and said, you cannot call me a malingerer anymore - I have lupus. To which my eldest said 'look at him, he is so pleased'. 'No I said, not pleased., relieved'
I understand completely. My partner is amazing and so supportive. Without him I don't know what I would do. My family have treated me with distaste since I was diagnosed only last month. One called me a "cripple" and said my illness would "just go away". It makes me so sad and I was low for days. I believe that we should only surround ourselves with positive people. Our lives with this awful disease is bad enough without the extra stress of narrow minded people. Xxx
Today we have the net with forums and support groups which can give realistit advice and support of all kinds. For this we should be very grateful. It is a part of my life which I know that I can rely on when some of the day to day people are less than helpful.
This is very true, I do not know what I would do without this forum when I am feeling lonely and misunderstood. It is a total god send that brings together people who understand and support one another! Xxx
Hi, I was diagnosed after my twins as an infection caused the lupus to come out. A woman in Asda was looking at boys and asked how we were enjoying baby sitting!!!! When I asked her what made her think we were baby sitting she answered, well your disabled you can't possibly be THE mum!!!! I was dumbfounded and my husband nearly slapped her s she carried on ranting about bloody disabled having kids. The store welcome person luckily knows us, grabbed the woman by the arm frog marched her out of the store told her that I had been ill etc and don't bother coming back as she was barred. I just burst in to tears and it caused me to start doubting I could be a mum. Anyway I slapped myself for listening to her. I read the spoon theaory and now carry a copy with me. Anybody that questions gets it thrust at them.
You need a laugh. Last time I was in a night club pre diagnosis I sat on a high stool and fell asleep. That's right I fell asleep.
Did your friend hear? If yes and she did not defend you then I would say show her the spoon theaory, she might see what it's like.
My crisis of health occurred a long time ago, but in the past, I have shuffled around sainsburys in my slippers and have sat on the floor with my face in my hands. And I have fallen asleep pretty much everywhere including face down at the dinner table.
There are alot of ignorant narrow minded people in this world. The ones who usually sail through life and couldn't even cope with a cold if they caught one, pathetic. I have one such neighbour who i thought was a close friend and understood to some extent, how wrong i was. I found out she was telling anyone who would listen that i had a disease called wait for it..........LUMPUS! oh my god, what an ignorant sad woman. Another neighbour has recently been diagnosed with Parkinsons and been saying awful things about her. Why does being ill bring out the worst in some people? I cant be bothered with them and think what goes around comes around. I dont say much about my illness to neighbours any more, just tell them i'm as well as can be expected and change the subject. Hope my answer has caused a little giggle for you. Try not to let the Lumpus get u down to much.
I've only had a experience with one friend. Who is just being insensitive and not trying to understand. I was actually admitted to hospital again over the weekend and her response was 'what now!?!' Now I was only diagnosed in march and have know this friend for two years as we met when our daughter's were born. In those two years I have been hospitalized 10times for 10 different things. Mad that's her reaction knowing how poorly I have been and still am. I never moan about being in pain everyday. I'm not one to give in and give the whole 'woe is me' crap. But to be like that has really ticked me off. And another thing not related to this but she also has a new born baby as well as a two year old and all she does is moan to me about it and how exhausting it is fully knowing that I have been waiting and praying and dreaming that my doctor's will let me try for another child for the best part of the last year. I'm so upset who her that I have stopped asking her how she is and see if she will ever contact me as it's always me doing the chasing. Rant over sorry xxx
its not until your poorly that you see who your real friends are. ive found that out, as my friend and i worked for the same company and she was constantly phoning in sick with lupus tirdness so being a good friend i would cover her shift so our boss wasnt short staffed and helping my friend keep her job, it was only when i was dianosed in 2005 that she confessed that shes was lying all along! what a mug i was, i stopped all contact.
my immediate family are understanding as my sister has lupus and my brother M.E and our late sister had lupus too. sadly my aunts and cousins shrug lupus off as i must be lying as i look so well!! ...........GRRR! ..........they should spend a day in all our shoes! x
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the thing is, I don't want the world to stop for me so I hope nobody thinks that's the case. I understand my friends still want to go out etc, but i didn't think I was being unreasonable this time. Got a weekend in Edinburgh this weekend with much lovelier people 
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