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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

to be exhausted with my friend's Chronic Fatigue Syndrome?

318 replies

LemonDifficult · 04/10/2011 22:33

My friend has been diagnosed with CFS. Over the past 6 months or so she's been struggling with tiredness. She's had blood tests which found nothing, she's looked into herbal medicine and so on. A couple of weeks ago the GP said it's CFS.

During the past few months she has become more and more self absorbed. She is single, she wants to meet someone and have a family and is feeling the pressure as she's in her late 30s. Along with this taking up much of our conversations, she talks constantly about her tiredness, or just other aspects of her life. Almost nothing about me, except on a couple of occasions some bitter digs about how parents are so rude/thoughtless/whatever. I'm sympathetic but beginning to get sick of it. I'm also sad about it because we have been great mates. I try, I really do, but my frustration with her is getting the better of me.

If she was to ask me I'd say I think it's depression or stress by another name with sleepy side-effects, but if I so much as hint at that I get the brush off. In my view, she needs a serious amount of counselling to deal with the trauma of losing both her parents when she was young and various other issues that have come up along the way. She has barely had a proper relationship - the last one was 12 years ago. That the CFS might be in anyway be a MH issue is a non-starter with her.

So AIBU? Is this CFS absolutely out of my friend's hands? And at what point am I allowed to say, 'I've done my duty as a mate and listened to how hard it is not being able to get up until noon. Now I'm fed up with your jellyfish comments about the evils of 'screaming babies' or whatever'?

OP posts:
Alwayshome · 06/10/2011 22:32

Hey LemonDifficult,
ME/CFS is a contentious issue you may have noticed! You are asking and thinking and questioning and that seems to me to be something a good friend would do. I like to analyse things too.
And you are going to be chasing your tail forever with the physical/psychosomatic/psychological/ mental health conundrums.Everyone has an opinion and thinks they are right. I've come through the long journey back to health with ME and still sometimes find myself wondering about chicken and egg.
Let it be with the whole diagnosis thing. You don't need to figure all that out to do right by her and by yourself. Things may become clearer with time.
When I was first diagnosed my friends found it hard to be around me. I am sure they found me obsessed with the illness, very confusing and boring. For my part I was at this stage simply in survival mode, living hour by hour trying to avoid physically descending into meltdown. Some friends became really angry with me because it was easier for them than to face their own fears of such a devastating loss of control over your own life, others were angry as a kind of grief process for the person I had been, others simply hated the fact I was having time off work! Unconditional love would have been nice but we're only human and I learned a lot through these experiences. And so did they.
But I don't think I was snide and I took care to be interested in their lives. It gave me pleasure to forget my own hell. We are all different. Personality plays a role alongside illness.
I think you do need to cut your friend some slack with the negativity, Grubly makes good points, she is scared and confused. But it's no use playing the good friend when your resentment is brewing to the point you want to take over the victim role. I would let the comments about babies slide, surely that's not personal and comes from grief at not having a family of her own. But rudeness and ignoring you as a person, I would tackle that.
Take care of yourself.

LemonDifficult · 06/10/2011 22:51

Alwayshome, I think I'm grieving 'the friend she'd been' as you describe. She's a very important friend to me, and now it's as though she's the same person and not the same person. And I'm fucked off. And particularly fucked off because I think there IS a point at which people have to take at least some responsibility for their situation.

And before you all point out that she doesn't owe that to me, I know it. And I want to, BUT WON'T, yell at her: 'get some counselling, chill out and stop being so friggin' bitter and you might meet someone and things will improve'.

OP posts:
ImperialBlether · 06/10/2011 22:52

SexualHarassment, you are speculating yourself, there!

notlettingthefearshow · 06/10/2011 23:03

I don't think you understand CFS. Which is fair enough because it is quite a mystery even to professionals, but your friend may be upset that you aren't taking her illness seriously. To her, her health has wellbeing is in tatters, and there will be many people who do not believe her illness is 'real'. So that might add to her frustration.

I have a few friends who have suffered from ME and prior to that they were all very lively, positive, proactive people who made the most out of every single day. It was very sobering to see one of them in a wheelchair for months at a time. Knowing her before the illness and talking to her since (she has used EFT and managed her illness very well), it is a very cruel illness. It's no joke to feel too exhausted to do much for more than a couple of hours a day. Your friend is probably bitter and envious of how full your life is in comparison.

Having said that, being ill doesn't excuse her being a poor friend, and yes, it is draining to be around people who are ill. I would probably be inclined to pull back a bit and see her less often. That might make her appreciate you more.

Migsy1 · 07/10/2011 10:18

I think OP is being a good friend. As I said earlier I have suffered this terrible illness myself and I lost "friends" because I was unable to socialise. I never actually treated friends who were willing to be with me badly, neither did I not care about my friends. Yes, she needs to take some responsibility for herself. Of course she will feel miserable but making good friends miserable is not the way to help yourself.

mathanxiety · 07/10/2011 20:18

People speculated to my face after goodness knows how much speculation behind my back (plus copious googling, the results of which they shared with me) over the course of about two weeks from the original misdiagnosis to when they started approaching me face to face or over the phone and then again when the cirrhosis idea replaced the ulcer. When they voiced their reservations to me about the misdiagnoses they said 'we think X and Y' as well as 'I think your doctor is full of it'. I remain very grateful to them for their bad manners.

anothermum92 · 07/10/2011 22:17

This reply has been deleted

Message withdrawn

diyvspse · 07/10/2011 22:32

The fair weather friend. In a storm.

sleepyowl12 · 07/02/2012 16:10

I know this thread was written some months ago, but i felt compelled to write something as it made me very sad.

Firstly, I think it's important to be clear what m.e/Cfs is. M.E is not depression, nor is it tiredness/ sleepiness. It's a very disabling physical condition, recognised by the World Health Organisation as a neurological illness, affecting the central nervous system, immune, cardiac and endocrine systems.. The main symptoms are extreme exhaustion, muscle and nerve pain, sensitivity to noise, light, smells, disordered sleep (either interrupted, hypersomnia, or insomnia) and the chief component of true M.E, post exertional malaise which means all these symptoms are made worse by mental or physical exertion, which depending how severe the person has M.E can be as little as brushing one's teeth or for those who are functioning at a higher level, a short walk, too long conversation etc...

This illness changes the sufferer's life completely, they may have to give up work, or only work part time, they can no longer participate in activities they used to enjoy, such as exercise, travel, going out with friends for dinner. They may only be able to manage an hour tops chatting to a friend before they reach their energy limits, maybe even less, maybe more.

This is true M.E. With depression the person does not want to do things, with M.E/CFs they want to do them, but they are too ill to do them. Depression is a horrible condition and so is M.E but they are completely different and what might help a person with depression will not help a person with M.E. On this thread there was the suggestion that people with M.E do not like being told they have a mental health illness. This is not because they somehow think a mental health illness is inferior it is simply that they know that isn't what they have got and the treatments/suggestions for managing the depresssion are not going to help a person with M.E. Eg exercise, going out for a dinner with a friend may help someone with depression, for M.E, the person would love to do these things, but can't. For a friend to suggest they are not choosing not to is painful.

Lemondifficult, if your friend has M.E and not depression, to suggest to her that she has not M.E but depression is not helpful, in fact it's very isolating and hurtful. You are sadly denying her reality - that she can no longer do the things she once did. She is also facing that if she has this disabling illness, such things as relationship, having children are not going to be possible. She is facing huge loss. Anyone dealing with such loss needs support and love, not the suggestion that she isn't dealing with these huge symptoms and she could choose to change it. You say you are worried she might be giving up on a career, having children. The horrible reality of M.E is that she may have to give these up through no choice of her own but due to the disabling symptoms of CFS/M.E.

Now because there is no diagnostic test for CFS/M.E occasionally someone with CFS/ME if they have an inexperienced doctor may wrongly diagnose the person with depression as having CFS/M.E. People with depression do not have post exertional malaise, where they feel worse if they go over their limits.

THe medical world have been really bad in understanding and researching M.e and even though the symptoms are discrete, some doctors don't understand it enough and make a wrong diagnosis. You said though that your friend used to be active, lively, warm so it sounds to me that the diagnosis is correct. Nobody chooses to live the life CFS imposes on you, it is very restrictive. She may well be picking up on you not actually accepting her new reality and finds herself justifying herself more which in turn can be irritating. The most helpful thing you can do for your friend is to believe that she is ill and that she is dealing with life changing illness.

If you continue to deny her reality, you will do much damage and the friendship cannot continue. She is facing huge loss and she probably can sense that she may be losing you too. You say she accepts an invitation to go out and then moans the next day that she feels ill. This is how M.e works. If you do too much the symptoms will be worse the next day. With time, a person with M.E gets better at managing their limited energy resources by keeping within their limits, but a supportive network really helps in the person sticking to this. She probably agrees to come out with you all because she doesn't want to miss out but hasn't the confidence to say she can't as she feels she will be forgotten or that could you help her by booking a restaurant nearer to home, not staying out for so long or doing something at her home.

One person here mentioned how people with CFS/ME seem to give up and gave an example of someone who knew who had a good job and is now divorced and housebound. It made me so sad, if not a little bit angry, that the person on here suggested that they had chosen to live such a miserable existence, housebound, workless. THis person had no choice in this, the physical symptoms mean the person can't ignore their exhaustion and go out. With M.E if you push, the illness gets worse. People can become so disabled that they are bedridden and tube fed for years. Like many illnesses, there is a spectrum from mild to severe. If not managed properly people can find the m.e gets worse. For most people with m.e/CFs it is a lifetime illness, only a small minority make a full recovery. Many can improve, sadly some don't or even become more disabled. The illness fluctuates and relapses can happen. With someone for a few years functioning at moderate, only to become severe for a few years, or months. Improvements can also happen, it is unpredictable. There are no recognised effective bio medical treatments and the only thing a person can do is manage the condition through pacing rest and activity which will be different depending on how bad the M.E/CFs is.

As a friend of someone with M.E, they can choose to stick by their sick friend, believe them, ask them how they can help, what the person can and cannot manage, or they can say my friend can no longer do what he/she used to and i am not willing to accommodate her changing needs and so I am out of here. Lemondifficult, do you value you friend, do you want to help her, accept her reality, find out more about how the illness affects her and find ways together you can still spend time together, or do you want to deny what's going on and blame her for not working/ pulling herself together, adding hurt on to an already difficult situation? Please don't suggest she isn't really experiencing all these horrible symptoms and just needs help to sort out problems from childhood. She may have these problems but they can be separate to her CFS and not the cause. Just as someone can have childhood problems and then get M.S, parkinsons, diabetes, cancer and so on..

Finally, even the person who is ill does have some responsibility in still showing support for their non ill friends. Her being insensitive to you is not on. However, she may have picked up on that you are not accepting what is happening to her and so she has become more rude.

By now I think you have guessed that I have M.e. I have had it for 13 years. I have had to give up a career, raising a family, travel, and a social life. I am currently housebound. I once used to travel the world I now can't even get down my stairs. Out of four good friends, two have stuck by me and two bailed. Losing so much and then losing friends is very, very hard. I think one bailed because she truly believed as you do that i somehow was depressed and chose this limited life. This was so hurtful. We could have remained friends, it would have been different to before as i can't do the same things. She wasn't willing to accept my reality. Also for you Lemondifficult if you won't accept her reality, yo uare going to be very frustrated too as you see her choosing not to sort herself out rather than the reality that she had no choice getting ill. A chronic illness is a huge life change, either friends say i want to stick by you and help you, or friends don't. You need to be honest with each other, hear each other's fears, grievances, both be willing to compromise. IT is possible to maintain the friendship if you are both willing to be honest with each other and adapt to the new circumstances this illness brings. Only you know whether you want to support your friend.

As I was so cut off from the world due to being ill, I did love to hear about what was going on in a friend's life, but I could only do so if they accepted that I was ill. I really hope you can sort this out. If she has been a good friend, please don't give up on her. The things you do as friends may have to change but you can still be in each other's lives.

sleepyowl12 · 07/02/2012 16:21

Ps, I should add, not only did I want to hear about what my friends were up to, I also wanted to be a friend back, offer them support, or help with their problems. Being ill and being unable to feel work, there was much I couldn't do, but energy limits permitting i could still be a good friend. However, as said, if the friend did not acknowledge the reality of my illness, then I couldn't support them back, as we were living in two diffferent parallels. If you become ill and you can no longer do things, it is so important to be believed. Please believe your friend and offer her encouragement at how well she is managed such a life changing illness.

sleepyowl12 · 07/02/2012 16:24

Pss belief, not judgement is what your friend needs. Just as you need your reality acknowledged too, being a mum to a young child and the difficulties that that entails. But until you accept her reality, I think you will have problems.

NorfolkNChance · 07/02/2012 16:29

Well said sleepyowl

lesley33 · 07/02/2012 16:46

sleepyowl - I think one of the problems with a diagnosis of CFS/ME is that it is a bit of a catch all diagnosis. What I mean is that it is often a diagnosis suggested when GP's or Consultants don't know what it is and maybe think it is all in your head. I have had personal experience of this.

So I think there are people who have ME or CFS and there are others where GPs suggest it is ME or CFS to basically get rid of the patient - even when the symptoms don't fit or the GP/consultant thinks its really depression.

If a clear test does become available, then this will sort out this issue.

georgethecat · 07/02/2012 16:59

Haven't had time to read all through but if you are still wanting to hang in there but don't want the negativity perhaps you could steer the friendship in a positive direction - exercise is supposed to help in CFS. Perhaps you could suggest that you do something together, go for a short walk, swim, that way your friendship could take a turn away from one way counselling sessions to something to do together.
Had to take a similar decision to back away from a permanently ill aquaintance and limit our contact as it was constant drama & emotionally draining & there was nothing I could do to help & most importantly this person wasn't helping themselves in any way.

sleepyowl12 · 07/02/2012 17:40

Thanks Norfolk. As this thread was written a few months ago I didn't know whether anyone else would read my post, but just felt compelled to write having a first hand experience of this condition and the huge effects it has on friendships.

Lesley, I agree with you as, as I said in my main post, some doctors do wrongly diagnose CFS/ME in some cases and this causes a lot of problems. With people believing they have M.E, doing something that cures them, or helps them significantly improve and then they and others not understanding this will not help someone with true M.E.

With M.E/CFS, there is the big problem of doctors using different criteria to diagnose CFS/M.E. One set of criteria only requires fatigue for six months and no other symptoms. The more strict criteria, especially the recent ICC criteria require symptoms from many bodily systems effected, immune, endocrine, central nervous system and so on. The ICC criteria describe M.E as 'a severe, complex, acquired illness with numerous symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems.' And the chief symptom is post exertional malaise which is quite distinct to M.E, as exercise tests are starting to show. People with m.e are showing many immune abnormalities after exertion which do not come up in any other physical illness. ALthough, yes, I agree a diagnostic test is what we really need to finally correctly diagnose those with neurological M.E and those with a fatigue causing condition that is not M.E. However, the symptoms of M.E are fairly discrete, especially the canadian and iCC criteria and using them should give an accurate diagnosis. Unfortunately, there is not enough training given to students and GP's on M.E and diagnosing it and mistakes are made.

The criteria that only require fatigue are too wide. Fatigue can be the cause for a variety of reasons, including depression. But CFs/m.E is a lot more than just fatigue. It is this wide criteria that have caused so many problems in diagnosing and researching CFS/M.E, despite patients and M.E charities pointing out the wider crtieria should be dropped to not muddy patient cohorts.

M.E has no more psychological component than any other physical illness. Yes, there will be psychoglogical effects of dealing with a life changing illness and getting counselling to deal with it will help the person cope with the huge life change better and perhaps even manage it better which may improve the condition as pacing rest and activity is so important with m.e. Counselling may not improve the physical condition at all, it just might make the person able to cope with the bad cards they have been dealt with better and enjoy what they still can do. But to suggest counselling/talking therapies can cure cfs/M.E is a joke and the NHS' sole focus on this has let the patients down hugely. We need bio medical research, we need bio medical treatments so we can start getting a better quality of life. M.E is hugely disabling. A lot of the general public don't realise this, i didn't until I got it. It's been described in the few studies that have been done as more disabling than M.S, cancer and congestive heart disease. Yet some people still think it's just a bit of tiredness.

The big problem was that in the 80's the psychiatrists got involved and started to insist there was a huge pschyologcial factor in M.E, perpertuating it despite there being some bio medical evidence of abnormalities. THe psychiatrists stymied bio medical research into M.E, widened the critera and created a huge mess. It's only now that the medical world are accepting that the psychiatrists talking therapies are not helping significantly and more bio medical research needs to be done. Recently the Medical Research Council announed for the first time £1.5 million into bio medical research into M.E. There is over 4000 papers showing biological abnormalities across the board, but a cohesive strategy needs to be done to translate the findings into effective bio medical treatments and finding the causes. It is of interest that until the 1950's when they started to find lesions on brain scans, M.S was considered a psychologcal illness. M.E has gone down the same route and it has caused a lot of undue ignorance and misunderstanding on how M.E affects the person.

So, yes, I agree there are a few people who have depression but are wrongly diagnosed with m.E. However, my fear is that Lemondifficult and her husband have seemed to have decided that her friend doesn't have m.e/CFs but depression and so if the friend got some counselling for the depression and any stress in her life then her CFS/M.E would go away and all will be well. THey are frustrated that the friend is not doing what they think she should do, as one would be if they are right.

However, the damage and hurt they are causing if her friend does have Cfs/M.E will be huge. If the friend used to be active, warm personality etc and has now changed, this may be a big clue as to something is seriously physcally wrong. I think Lemondifficult needs to ask her friend for more information about the symptoms of M.E as she does not seem to understand how M.E affects a person. She describes it as stress and a bit sleepy, Me is more much than this. She could her friend how she feels, what are her symptoms, what can she no longer do? Does she have post exertional malaise? ie, she feels worse if she does too much which sounds like she does as Lemondifficult mentioned how the friend moaned if she went out on a social occasion she felt worse.

As I said my friend would not accept I had a physically disabling ilness. At the time she never explicitly told me this, but i could feel it and afterwards I found out that she did think i was just depressed. I was devastated that she somehow thought I was choosing to have give up my job, stay at home, use a wheelchair and she was frustrated as she thought if I accepted I was depressed I would recover. It was horrible. 13 years on I am still very disabled and she has some high flying career and never has got in touch with me. It's very painful to lose a good friend who you have spent so much time with and emotionally invested in on top of the many losses that come with physical illness. A good friend will acknowledge these losses and not cause more by disbelieving and judging you. I agree even if you are ill, that does not give you the right to not show interest in your well friend's problems and lives, all people have problems, but if a friend won't accept another friend's reality, pain will follow and the friendship won't survive.

To end, I forgot to mention one other symptom of M.E which is poor memory and concentration which could her explain her friend's behaviour.

HeartsTrumpDiamonds · 07/02/2012 17:40

Only on page 2 so far but marking my place for later - seems an interesting discussion.

sleepyowl12 · 07/02/2012 18:00

Oh my goodness, georgethecat I can see you do not understand how CFS/M.E affects a person at all and hence why you concluded your friend wasn't doing anything to help themselves.

There is a lot of misunderstanding about m.E and some doctors are still giving out wrong advice causing a lot of damage. I don't know where you get your info georgethecat but it's very out of date as exercise can make CFS/m.E worse, not better, although psychiastrists would have you believe otherwise.

Twisk and Maes paper www.theoneclickgroup.co.uk/documents/ME-CFS_docs/Twisk%20Maes%20CBT.pdf shows how exercise not only does not help patients with CFS and M.E but also can be harmful. Patients and charities have been crying out about how exercise can make the symptoms worse and it needs to be recognised and studied. The chief symptom of CFS/M.E is post exertional malaise which means all the symptoms are made worse by physical or mental exertion. It's very unique and is a devastating to live with. If the person with CFS does not keep within their limits all their symptoms, pain, exhaustion, poor concentration sensitivities to noise and light get worse only improved by extensive rest. If they regularly overdo it, the disease will progress into more a severe form. IN the past some doctors advocated graded exercise and patients went from moderate to in wheelchairs and bedridden.

I used to be very active before i got m.E and I still mourn not being to go on a simple walk, let alone anything more intensive. Again, if people think like georgethecat that the person with CFS can improve by doing some exercise, they are denying the reality of CFS/m.E and thinking the patient is not helping themselves, are then draining and then abandon their friend. In truth it's the opposite, the person with CFS/ME longs to be able to go for a walk with their friend, have a day out but they can't, their bodies won't let them. Helping yourself with M.E is the opposite to most conditions, it's learning to live within the limits. TO have life your life in this way, friends have to recognise this is what you need to do and accommodate it, as well as praise the person with dealing with such limits on their lives. If the friend insists they need to do more, the friendship will not last and the person with the illness will be devastated at the ignorance and lack of support from their friend.

Can you imagine once being an active person, then suddenly getting a physical illness that stops you being able to enjoy all the things you loved to do. But on top of that the friend concludes that you can really do it, you just don't want to. THey offer no support, no sympathy, just judgement, it's devastating.

Georgethecat, I really ask for you to educate yourself better on what the symptoms of M.E are and how to best manage it. So if you ever have another friend who sadly gets this disabling illness, you will be able to offer support and help, not judgement and abandon them. Please, please, swallow your pride and educate yourself on M.E. A good link on M.E and it's symptoms is here www.name-us.org/MECFSExplainPages/SymptomsLists.htm I would be so grateful if you read it and came to it acknowledging you may have been wrong about how M.E effects a person. Before i came down with CFS/M.E i may have got it wrong too, that's not your fault, but you can choose to learn, please, please do.

fuzzPigwickPapers · 07/02/2012 18:45

If you're still around LD, how is your friend doing now?

Busyoldfool · 07/02/2012 18:53

Have read most, but not all of the thread and I must say that I think OP is being a really good friend. How many people would just not bother any more?

She trying to understand her friend's condition and suport her but it might be that for the time being neither of them is getting anything out of this friendship. I don't know but if she didn't care she would certainly not bother to take such an active part in this thread especially when some posters have been quite hard on her.

By the way not everyone can know everything about every illness and ignorance is not a crime.

I hope that things get better for her friend who is certainly in a very bad place at the moment and it would be nice to think that the friendship survives this.

CFSKate · 07/02/2012 19:07

In case anyone's interested, we have a big thread on ME/CFS over in General Health here

www.mumsnet.com/Talk/general_health/1105040-Could-I-have-mild-ME

where we offer each other support (although it says mild ME in the thread title, it's for anyone with ME, mild/moderate/severe), and also I try to post any interesting news e.g. Rituximab drug trial results, or the latest medical conference on ME .

It can be a slow moving thread, as obviously we are all ill, so a while may go by before anyone replies, so please don't think we are ignoring you if it takes a while to get a reply on the thread.

ImperialBlether · 07/02/2012 19:39

I agree with you, Busyoldfool - she really is being a good friend.

And I think SexualHarassmentPanda has a hectoring tone to her voice that is absolutely bloody awful.

Smithson6 · 07/02/2012 19:59

As a long term ME sufferer i would add my voice to SleepyOwl's that it is an illness that is really tough on friendships and other relationships. I would also say that in my experience, in the very acute early years when i was so very ill and frightened, i could not have given any thing back to anyone. Remembering to ask about others lives/loves/jobs etc. was totally beyond what I was capable of. i could barely string two words together, was in constant pain and suffered from terrible vertigo and blurred vision as well as all the fluey nonsense and fatigue. I'm sure that I came across as a health bore and a depressive to others but honestly- every ounce of strength I had was turned inwards just to make it through the day. A couple of friends stayed the course of the illness, most didn't.

sleepyowl12 · 07/02/2012 20:10

Hi CFSkate, thanks for the link, appreciated.

It's interesting Busyoldfool and Imperialblether your take on the issue. I am of course seeing it from the person who has Cfs/M.E and my view will naturally come more from that side whilst others from the person who isn't ill.

I should say I don't believe if someone gets ill that this gives them carte blanche to only think of themselves and not give support to friends. And Lemondifficult obviously feels that her friend doesn't show her any support and she has a right to need support too.

However, Lemondifficult has said that she believes that her friend has depression and that her symptoms are due to depression and stress. Now, i don't know the girl and her background but as I tried to show above if her friend has true CFS, this is not depression and going for counselling/sorting out stress will not magic away her change of circumstances and so even if Lemondifficult is still spending time with her friend if she is not acknowledging that her friend has a serious physically disabling illness, their friendship will be very difficult and her friend will pick up that Lemondifficult does not believe she has symptoms that cannot be solved by treating it as depression. You can spend time with a person but if you are not acknowledging their reality, then you are not being a good friend. Lemondifficult's friend is at fault too if she isn't acknowledging the problems in her life, but she may be so overwhelmed with is what has happened to her and getting the definite vibes from her friend that she thinks she can escape her horrid circumstances if she gets help, when if it is true CFS/M.E there is no treatment, apart from management, that she feels so unsupported herself she cannot give anything back to Lemondifficult.

It's good that Lemondifficult has come on here and asked questions, although she hasn't said my friend has just been diagnosed with a horrid illness, how can I support her, but more along the lines of my friend won't sort her life out and I'm frustrated with her. If her friend has CFS, her life has changed and it can't be just sorted. Lemondifficult either has to decide to really try and understand the condition or walk away. I would hope a good friend would choose the former.

I agree that you can't expect a person to have an in depth knowledge of every illness out there; however, I hope it would not be too much to ask if a good friend becomes ill that other friends read up about the condition, ask the friend how it affects them and so on. M.E more than many other conditions seems to bring about judgement, rather than support. I think they need to be frank with each other.

Wretched · 07/02/2012 20:21

Sleepy owl, you certainly have stamina for typing! Some epic paragraphs there.

I have a chronic illness but don't ever discuss it with my friends. I don't want it to become a topic for discussion or anything to be worked around. They are my mates, I hang around with them for fun. I dp certainly don't expect them to research my illness or become an authority on it. How boring for all concerned.

margoandjerry · 07/02/2012 20:37

I think the OP is being a really good friend by still being there at all. We all want to be there for our friends when things are tough but we also all have responsibility to behave respectfully towards our friends' lives as far as possible. Conversations for hours about her with no interest in anyone else are not respectful.

I know that depression can have this effect on people and that's why it must be such an awful condition to have to live with (as the sufferer and as the carer). That's perhaps also why CF has got badged in people's minds as a MH issue - because the OP's friend also seems to be behaving like someone with depression, where everything becomes about them.

Sorry, no advice but just thinking about what a tough situation this is.