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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To not tell my family about my health?

42 replies

LtdEdition · 14/10/2020 04:18

I am currently in the process of being diagnosed with a neuromuscular disorder. I have fallen several times since January, and I am now walking with a pronounced limp. I can’t climb stairs without using the handrail. I get asked why I’m limping daily.

Unfortunately, Covid has made the waits for tests and appointments even longer than normal. Meanwhile, my mum and my sister are asking for updates. They were calling me after every single appointment wanting to know what the doctor said. Most of the time there wasn’t anything to tell them, just more referrals for more tests. I understand that they are trying to be supportive, but I’m frustrated and I’m frightened and being pestered for more info is not helping me.

I am dealing with a potential diagnosis of ALS, or another debilitating but less fatal motor neurone disease. My life is going to be upended and I do not have the mental energy to deal with anyone else’s worries. I do not want to hear all the positive “everything will work out” crap that I have already been subjected to. No, it won’t. I want to be left in peace to grieve the life I’m not going to have now.

Their idea of support is not the same as mine. I should be supported the way I need, not the way they think I need.

AIBU?

OP posts:
seayork2020 · 14/10/2020 04:25

Can you send one email to both to tell the facts of

'this and this has happened, next this, I am keeping you informed and please do not reply as I will tell you the next details when I fell up to it and will not discuss it till then'

and stick with only contacting when you feel you want to

Boomerwang · 14/10/2020 04:44

I think the PP has a good idea. Possibly create a group conversation and leave messages about your treatment and how you are feeling. That way they all know at once and it might reduce the probing questions. One daily or even weekly update keeps the worried in the know and you can reply in a manner you see fit. Let them know the bombardment is stressing you out and give them a chance to back off.

They just care about you.

Original poster
LtdEdition · 14/10/2020 05:09

They just care about you.

I know they care. And neither one of them seems to believe that I could possibly deal with things differently than they do. They would want the family rallying around, bringing meals, dropping in to see how they are. I don’t.

Right now, I’m just telling them that I haven’t heard anything from the doctor.

OP posts:
Travelledtheworld · 14/10/2020 05:09

Sorry to hear this OP Flowers

waterproofed · 14/10/2020 05:49

I’m so sorry to hear about the diagnostic spectrum you are dealing with, that’s extremely tough Flowers

Of course it’s up to you what and when you tell your family about this. Your well-being is paramount here and if a life-changing diagnosis isn’t an opportunity to start putting your own wellbeing first I don’t know what would be.

I really hope your DM and DS will understand and if they don’t I hope they can respect that you need to deal with it in your own way.

I wish you all the strength and comfort

Mummyoflittledragon · 14/10/2020 05:59

YANBU. 100%
Don’t let the voting system tell you otherwise. You aren’t proposing to cut your family off, but to take the private time you need to come to terms with a life changing event. This is about you, not them.

The WhatsApp group conversation is a good idea or any form of communication that you don’t look at regularly. So that could be setting up a specific email account just for the purposes of communicating with them. Whatever medium you decide, you can mute the messages so you don’t get alerts and go into it when you are ready to look. Ban every other form of communication. Ignore phone calls.

I presume from the way you’re talking you’re single, is that correct? Do you have a trusted friend,, who could look at your phone for you and read the messages?

Straven123 · 14/10/2020 06:14

Can you tell them you are getting on with your life and don't want to be constantly contacted as it reminds you of your illness and you don't want to keep thinking about it.

I had a a breast cancer threat and had to wait weeks for further tests, a family member felt it was supportive to call me daily and assure me it will be fine Hmm / ask me how I was.
When there is nothing you can do to change things you just prefer not to dwell on it.

chatterbugmegastar · 14/10/2020 06:33

My sister always withdraws when she has a health issue. I don't know why but I guess she finds it easier that way

Initially I was worried that I'd upset her somehow but after a while I realised it's just what she does

I'm now used to it and don't bother her at all, I just wait for her to contact me

If I'm honest it has changed our relationship (for me anyway) as I found the total lack of inclusivity sad and hurtful

But it is how she wants it

TheMamaYo · 14/10/2020 06:46

You need to tell them that.

I have spend a long time trying to support someone I love through cancer, and hearing that they don't want the support in the way I was giving it, was really helpful. I just wished they said something earlier. Once I knew, I did it the way they preferred and that was better for us. If your family doesn't know, they can't change it, and be there for you in a way that will help you through this.

I'm so sorry for what you are going through, you all sound lovely.

countbackfromten · 14/10/2020 06:52

@LtdEdition I am so sorry that you are going through this. One thing we did when a very close family member was seriously ill was set up a WhatsApp group that we used to give updates but muted and as soon as the message was sent ignored until the next one was sent. They could all reply as much as possible but it gave us control. And we asked no one to contact us except via the group explaining that it was too hard to constantly be in contact about it. Would that be of any use to you?

I really hope you have answers soon Flowers

TestingTestingWonTooFree · 14/10/2020 06:53

I think it would be worth being clear with them about what you want/need. If that’s no questions or even no contact, that’s fine. Not wanting to constantly talk about something frightening that you can’t control is perfectly legitimate.

Iheardarumour · 14/10/2020 07:06

My brother had chemo for a lymphoma about 5 years ago. He was very clear how we could all help. I offered to buy him some things that he needed and he said, thanks, that's appreciated. (He and his family are on a low income). My parents babysat his kids when he and his partner were at hospital or if he was too tired to cope and his partner was getting overwhelmed. I went to visit him on his "good" days. We didn't go on and on about the illness, but decided to plan for stuff we'd do in the future. He's fine now, and doesn't want to talk about it. He only looks to the future. My point is he made very clear what support he needed and what he could do without. I hope OP has the strength to be straight with her family and they abide by her wishes.

CherryPavlova · 14/10/2020 07:21

When I was first diagnosed with breast cancer I wanted space and privacy to accept the diagnosis and potential outcomes before sharing more widely. I didn’t tell our children or any friends until I had clarity about prognosis.
I’d tell your family exactly that and ask them to back off with an understanding you will tell them when you know anything for certain and have got your head around it. They may be disappointed but need to put your wishes first at the moment.
Caring is supporting in a way you want not in a way they want. That may mean not asking.

miimblemomble · 14/10/2020 07:29

M’y mum had radiotherapy for a precancerous condition a couple of years ago. She didn’t tell anyone but my dad until she was due for treatment - and she only told because my dad pointed out that my sister and I needed to know about family medical history (it was breast related).

It was hard but I had to respect her decision. She’s a very «in charge» person, and the idea of being in any way weak, needy etc is alien to her. She also said that she struggled less with the diagnosis and much more with the thought of having to deal with other people’s pain and worry. She basically wanted to retreat, deal with it, and only tell anyone if she had to.

It was hard on my dad though, keeping it secret and worried about her. And it did make me feel a bit infantilised: I’m a great big grown up, wouldn’t freak out, and might have been able to support her.

But I think her need for privacy and to deal with it her way trumps my want to be informed / involved. Yours too, OP. Courage.

Crayolo · 14/10/2020 07:29

Tell them that then. If they're reaching out they probably think you're withdrawing because you're terrified or whatever, just say that you appreciate it's because they care, but what you need right now is some space, and you'll update them when you know more/are ready/want to. If you don't they'll keep trying and pushing because that's what people do.

Dotinthecity · 14/10/2020 07:42

Can you just email them saying exactly what you've posted here. You could also tell them what you do need and what you don't. I think you've explained your feelings pretty well in your post.

AuntieLydia · 14/10/2020 07:50

YANBU. I know how you feel, I've had health problems and not told my close relatives. They'd be so anxious and want constant updates and reassurances. I'd have to support and reassure them when I needed to concentrate on myself.

OneInEight · 14/10/2020 08:18

This is why I did not tell anyone (dh included) when I suspected I had cancer. I needed to know what I was dealing with before sharing. it is lovely they are caring but you absolutely need to prioritise yourself and your needs at this time. Wishing you all the best.

emmaluggs · 14/10/2020 08:21

Must be hard for everyone involved but you are the most important, how you need to deal with it is a priority and they have to deal with that.

I would talk to them both, tell them when there is an update you will give one, but at the moment your coming to terms with everything and you need space and time to digest it yourself.

Be kind to yourself.

TheDuchessofDukeStreet · 14/10/2020 08:46

Set your boundaries, Op. otherwise you are constantly going to be reassuring them which will be draining. Good luck 💐

altforvarmt · 14/10/2020 08:48

I’m sorry you’re going through this, and I understand your need for space to come to terms with it.

I think i am also in the camp of telling your mum and your sister what you need from them, rather than cutting them off. Give them a chance to support you in a way you want. Right now, they don’t know what that is. Perhaps communicate your health update by email, but let them know that this is as much as you can give them right now, and any further texts or phone calls need to be about any subject except your health.

If you tell them what you need and they choose to ignore that, then do what you need to do to keep them at arms’ length. But consider giving them a chance to give you the support you need.

ginghamtablecloths · 14/10/2020 09:01

I'm so sorry to hear this LtdEdition as ALS/MND is a dreadful diagnosis. We all have different ways of dealing with a crisis and your way may not be their way. It's difficult for loved ones as they feel helpless too.

If you get this diagnosis I advise you to contact the MND Association in your area. From personal experience I know that they are worth their weight in gold. Flowers

BackBeatTheWordisOnTheStreet · 14/10/2020 09:13

Of course OP since you're the one going through this you need to prioritise you're own mental health and it's absoutely understandable you don't have the emotional reserves to think about your family's worries too.

Is there someone else (like a partner) you can filter information through? So you're not pestered for updates? If not will your mum and sister be ameanable to you simply explaining bluntly that this is incredibly difficult for you and having to discuss it and pretend to be upbeat about the possible diagnosis isn't helping?

bluegreygreen · 14/10/2020 10:44

My sister always withdraws when she has a health issue. I don't know why but I guess she finds it easier that way ...
If I'm honest it has changed our relationship (for me anyway) as I found the total lack of inclusivity sad and hurtful

But surely the important thing is what helps your sister? Being supportive is just that - supporting the person who has the difficulty.

OP

Hope you manage to communicate with them in a way that helps you. As others suggest - perhaps tell them you'll update them if there's anything new, but don't feel like talking about it in between?

chatterbugmegastar · 14/10/2020 12:35

But surely the important thing is what helps your sister? Being supportive is just that - supporting the person who has the difficulty.

Absolutely. Which is why I am doing what she obviously wants

But it saddens me that she doesn't need or want my help or support.

Or maybe SADDENED me is a better way of putting it - I'm over myself now tbh