WIBU to send a snotty reply to DH's email.

[MrsZoidberg]

DH replied to an email invite explaining that we couldn't go because of DS. What he put was "unfortunately my son is not well as he has CFS which is the childhood version of ME".

I replied that CFS is NOT the childhood version of ME, but the same disease. I went on to explain why there are two names, and ended it with "but of course you know all this from your own extensive research into your son's illness"

Before anyone picks up that I replied via email and not verbally - even though we were in the same room - I don't like any conversations in front of DS that shows him that his own father doesn't believe he is ill . Just to be clear, he copied me in on the email, and I only replied to him and not the recipient.

DH's excuse was that not everyone knows what CFS is so he finds it easier to put that My answer was if they don't know what CFS is they probably don't know what ME is either. I certainly didn't until it wrecked my son's life.

I get really pissed off with family members who do not take this seriously, especially his own father. DS was diagnosed over 3 years ago. He is 16 and has missed out on such a lot. Two of his main symptoms are a permanent headache and hyperacusis (intolerance to certain sounds). DH has no patience with this. He knows that we cannot use knives on the glass chopping board, we cannot put food into the metal dog bowls when DS is in the room, we cannot use power tools or the vacuum cleaner without DS having time to prepare (leave the room, headphones, ear plugs etc). AND YET HE STILL DOES IT. I have lost count of the number of times I've yelled (whispered loudly) at DH that he wouldn't consider kicking someone in their broken leg, so why can't he give DS the same respect and stop causing him the same amount of pain!

But what especially pisses me off, is knowing that DH did a lot of research into MS as he worked with a woman for a few months who had it! Funnily enough, until he did that, I was regaled with stories of Jane did this and Jane did that every evening - then after she told him she had MS, I didn't hear another word about Jane again! But as you may have guessed from the comment above - he has never googled CFS!

ooops that turned into a rant instead of an Aibu

Well, YANBU to be upset but it sounds like your DH is in serios denial about your sons condition and resents the restrictions - Im not saying he is right to feel this way. Also I would know what ME is but not CFS if I read it in an email.

I think YABu as more people will have heard of ME so that sounds like a good way to describe it to someone not in the know.

I know what ME is but I have never heard of CFS before.

There's obviously a lot of history and resentment here

But on the whole, I don't think he was BU to reply to an invite in that way.

Clearly your husband does not believe it is a genuine illness - but you already know that.

Is he prepared to meet with the doctor who diagnosed it and be educated about it?

Well, I know a bit about ME, but have never heard of CFS, I also had no idea about the sounds thing.

TBH, this seems to be far more about concerns you had about "Jane" than about your DH's lack of interest in your son's illness and FWIW, I think his description was good enough for an email response to someone with no prior knowledge that your son is ill. He could have said, it's ME or it's like ME, but really why would it have made a difference?

Actually, he said "..my son is not well..." so he is acknowledging that he's ill.

I take your point about more people would know what ME was than CFS but the person he was emailing might already know what CFS is - in which case, DH would look a bit of a knob not knowing what his son's illness was?

Wouldn't it have been better to put the factually correct "CFS which is another name for ME" or call it CFS/ME which is commonly used now?

YABU to be so upset about the email. It doesn't sound like that is actually the issue at all.

YANBU to be irritated by your DH's apparent lack of consideration for your son's condition in general though. What does your DS think about it? (I know nothing about CFS so apologies if I seem ignorant or dim).

Hoaz - I'm used to his little infatuations, it's a bit of an ego boost, but I don't believe he would ever take it further.

I don't think this is really about the wording of an email is it?

You seem angry that your DH is what? Ignorant to the needs of DS? In denial of his condition? Not supportive/understanding? Has not assisted in reasearching his condition or seeking advice/help/treatment?

Hecate - No I don't think he would find time. There is shed loads on the internet though. In the early days I sent him links which he promised to look at when he had time - obviously he's been very busy for 3 years and is still trying to find this time

I am sorry that your son is suffering with this - how awful

I worked out what CFS stood for after the mention of ME but I would have googled it had someone said that couldn't come to something I was hosting due to their child having it.

Anyway, the email is moot I think. It sounds more like it was yet another straw on the back of a pretty knackered donkey.

Your husband's behaviour is unkind towards your son - your son has surely noticed this? Has he mentioned his dad's behaviour to you?

I am not sure I understand the connection to Jane. Another bubbling resentment I think. Is it because he spent more time researching Jane'e illness than his own son's? Why did he stop mentioning her?

I think you need to talk to your husband very seriously. He is causing your son distress and discomfort by behaving as though there in nothing wrong. You said it yourself - what would you do if he was actually kicking a broken leg?

Sorry, for those who haven't heard of CFS - it stands for Chronic Fatigue Syndrome. They're not sure of the cause but think it's linked to a virus. It affects the whole body and has numerous symptoms associated with it. DS's main ones are headache, hyperacusis, fatigue, nausea, dizziness, irregular sleep patterns, joint pains, inability to concentrate.

Actually when I read your initial post I thought CFS was actually cystic fibrosis so I think his comment was helpful.

However I think this is so much more than a comment in an e-mail. I understand why you wanted to use e-mail to communicate but you really need to find some space to have a proper talk.

I'm a bit confused about why he needed to go into such detail anyway. surely a simple "sorry we can't come as my son is ill" would suffice. Does a 16 yr old with cfs need both parents at home of an evening... couldn't one of you go?

DS has noticed it. But their relationship has been rocky for many years, so it just gets bundled into a load of resentment which spills out between them. There are words, sulks and then a quiet life with more respect on either side for a while.

Most people have heard of ME but not CFS. SoI think YABU. But thus us obv more about him not being interested in your sons condition. However, sitting on the fence here, it sounds like it is a BIG focus for you and maybe as the symptoms can seem somewhat vague, your DH thinks you are making things worse.

Just being nosy but why are you turning down the invite, how does you sons illness affect that? Maybe he's pissed off at missing out on something.

I think his explanation was absolutely fine tbh. I have heard of ME so that would make it a little clearer.
There are obviously a lot of issues though between you which sounds like hard work.

Kewcuber - it was actually an excuse as neither of us want to go - but it would have been difficult DS couldn't go, and he can't be left for any length of time, certainly not over night. Due to other reasons, we also have no-one he would trust to stay with him.

I have a chronic illness but if informing people of it I tend to explain that's its like something more common rather than go into detail.

My DH and family/friends know I have this but I don't think any of them have looked up the disease, they rely on what I tell them. I think this is quite common place IMO.

No, you wouldn't kick someone in the leg if broken, but you wouldn't always be walking around on egg shells with someone with a long term illness either.

I have CFS/ME, very severely a while ago, now I'm gradually recovering (am doing graded exercise/CBT therapy).

I think the name of the illness in the email is a red herring, just a tiny straw that's broken the camel's back. The fact that your husband hasn't learnt anything about CFS and the fact that he doesn't make adjustments to help your son is a really big problem :( Plus it's extra hard with CFS because there's still a lot of misunderstanding about it in the general population, so you really need your family to be working as a team to combat that.

The "Jane" thing is very interesting, why did he stop talking about her? Is he very uncomfortable talking about illness? Is it that he has negative views about people with disabilities?

Obviously to some extent he acknowledges that your son is ill. How is he about helping with other aspects of the illness? Is it just the noise thing that he's bad at dealing with? I've found that some people have a lot more patience/understanding of some symptoms than others - for example my lovely mum was/is very good about helping me with physical tasks, but very bad at understanding sensory overload. No matter how many times I explained it, she just couldn't believe that at my worst point I would feel physically stressed and tired by someone else rushing around the room I was in, to tidy or hoover. It was so frustrating, I'd ask her to let me know if she wanted to tidy so I could go lie down in the other room, but she'd argue with me that I couldn't possibly be finding this tiring, which made me feel upset as well as ill. It was strange, I still don't really know why mum found that aspect of the illness so impossible to accept, when she accepted and helped with the other aspects.

How would you describe your DH in general? If he's usually kind but has this huge blindspot with your son's illness, maybe he needs more outside support in coming to terms with it and dealing with his own reactions.

Wips - it is a big focus for me. I am his full time carer. I did all the hospital appointments to get him diagnosed, all the Occ Therapy stuff, etc I always tell DH what has happened at the appointment.

*"Most people have heard of ME but not CFS."

I'm slightly surprised at that. I think ME was renamed as CFS (chronic fatigue syndrome) about 15 years ago, though there was talk of changing it back, so perhaps that's happened too. But I hear people referring to CFS far more often than I hear people talking about ME.

Anyway, your DH could definitely have phrased it better but really he does need to get a grip and find out more about his DS's condition. Unfortunately a lot of people don't think ME/CFS is a "real" illness, so perhaps that's where the problem lies.

Cross-posted with a few of your posts. If you don't mind saying, what were the earlier things that caused resentment between your son and his dad? I think you need to pin down whether these issues are specific to illness, or whether your husband is generally unkind and thoughtless.

I'm sorry you've got no-one who can stay with him. That must put a lot of stress on you, not being able to take a break when your son has such a long term illness. Would you be able to work on finding someone who could give you a night off? I luckily had a few people who could come look after me so my parents could have a weekend away from time to time, and when I was a little better we sometimes employed a carer to cook me an evening meal while they went away. I was quite a bit older though, I can see that at 16 that might be a lot for him to cope with.

YABU to have an argument about your son's illness by email.

HIBU to not seem to particularly care about this illness.

I think your whole family need to do some serious talking or all this resentment is going to do permanent damage.