To not tell my family about my health?

[LtdEdition]

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?

@chatterbugmegastar

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

|Why would you want to be needed by your sister? Would you not prefer to know she was coping and managing without you? Is it not better to let her be the adult and make her own choices?

You should look at whose need you are trying to meet, perhaps?

But doing what she wants (what will help her) is support, surely?

I wonder sometimes if each of us has our own idea of what 'support' is, so we struggle if other people need something different ...

@Mummyoflittledragon I do have a DH. We have been together 5 years and married for 3. He has a very laid back attitude about most things and I don’t think he fully understands what all this will mean. Until I have a definitive diagnosis, I don’t want him to worry more than he already is.

I’m feeling a lot of guilt that I am spoiling all the plans we had for retirement.

Thank you to everyone for your messages of support and understanding.

I’ve had my little pity party and a good cry. Now I’m going to put on my big girl pants and try to talk to my family.

Appoint one other person to give updates to people who want them and ask that any questions/requests for updates are directed towards this person. Basically, find someone to be a gatekeeper. I did this for my mum and it meant she could have a maintain a sense of normality without having to constantly discuss her health. Thinking of you, OP.

I had a scare a few years ago, I told only my sil and my brother , I didn't want people stressing about my private medical issue. She had been through the same thing in previous months so she knew what to expect and she didn't constantly ask for updates. The last thing I needed was constant reminders of what I was going through . Some people just want to help but don't know how to , they have to be told how to do it

your disease, you deal with it how it suits you, not for their benefit. If that means keeping a lid on it until you have your head round things, so be it.

I’m going to go against the grain slightly here, although this is not a criticism.

I agree that it can be hard to have to relay information back to family especially if they draw their own conclusions about what you are going to want or need.

But I also think that it’s important to remember that they’re going through this as well. That doesn’t make you responsible for them,but ultimately, this isn’t just about needing to know so they can support you, it’s also about them being in a position where they will have to come to terms with the reality, and possible implications if it is e.g. MND which can be genetic.

It can be a bit short sighted, although understandable, to think that you are the only one going through this. In truth you’re not, they’re going through it as well but in a different way.

I have a serious heart condition. My family have actually been, and needed to be, incredibly supportive e.g. they moved into my house while my teenager was doing GCSE’s because I was going into hospital for surgery which ended up being a six week stay including a part of that in ICU, etc (not sure who got the worse deal there.... 😆.) But there have been times when what they have thought I need has annoyed me, or when my mum wonders if I’m ok and texts my DP to ask, as she hasn’t seen me during lockdown...

But at the same time, they have been the ones who have had to come to terms with the possibility that their DD (i.e. me) might die when I was first rushed in. They have also had to come to terms with the fact that their DD (i.e. me) is going to have to have a heart transplant at some point, and that if when the time comes a suitable heart can’t be found, that I will die. They are going to be the ones who will be left behind if/when I’m gone. And while I don’t think I necessarily owe them the explanations as and when they want them, I do think that it’s important to recognise that although I’m the one who is physically going through this, this isn’t just about me.

I’m glad you have a dh to look after you. You really really shouldn’t feel guilty. You’re going to need the emotional strength to get through this. Yes, it is life changing. But life doesn’t stop. It changes. And you will adapt. You need to just keep doing you. And let yourself grieve, fall to pieces and pick yourself up.

It is ever so hard to fight other people when you’re fighting for yourself. I understand totally. I had the opposite issue as I didn’t get any kind of diagnosis for years and was bullied as the hypochondriac whilst I struggled to survive.

Do whatever you can to protect yourself and ignore stupid comments from people, like chatterbug, who seems to make her sister withdrawing all about her. I’ve had to cut my brother off due to violence and threats of violence because I was collapsing all over the place and he decided I was making it up.

Why would you want to be needed by your sister? Would you not prefer to know she was coping and managing without you? Is it not better to let her be the adult and make her own choices?
*
You should look at whose need you are trying to meet, perhaps?*

Absolutely (again!)

I do agree

But can't I be a bit sad that we have lovely jolly times interacting and seeing each other - chatting , coffee-ing, etc and then she has a health blip and I am completely shut out

Of course she should have the support SHE needs. Of course she should (and does)

But how sad that the support she needs is literally zero contact with me (and anyone) - how sad that she doesn't need to talk to me and we no longer communicate on any level at all - until she says we can communicate again - (when the health blip is over)

I appreciate that my sadness over this situation was selfish.

But there we are. I was sad about it

YANBU at all OP. I'm the same type of person as you, to the degree that I probably wouldn't have told them at all unless I had to (I guess with your physical symptoms it was unavoidable).

PP's suggestion was good. Just send them one message outlining how you feel and then ignore any questions you don't feel like answering. Do you have a DP who could act as middle man/woman and screen messages or field questions for you when you're not feeling up to it?

xx

Very sorry about your possible diagnosis. I have MS. And everyone else's reactions/ opinions/ pity etc to it make it much harder. So I totally get where you are coming from.

Your health will suddenly become everyone else's business and it's really difficult to get your head round. I had a flare up of my MS and loads of people keep telling me I was doing so well, not used a stick for ages blah blah blah. Omg just shut up people!

@AlternativePerspective I can certainly see where you are coming from. When I finally have a diagnosis, my family will be more than welcome to the information and they can then process it to their hearts’ content. Right now, this IS about me. I’m the one being poked and prodded. I’m the one waiting weeks for tests and then longer for results.

I’m glad for you that your family has been able to help you through your health problems.

You mustn't feel guilty LtdEdition as MND/ALS is not caused by anything you've done. It's just one of those things, a very sad thing to deal with but please don't blame yourself.

YANBU You must prioritise yourself. They want to help I don't doubt it but it's not about what they want right now. It's only about what you want. I too could not bear the well meaning interventions of family members and the way that you almost always end up having to manage their emotions or eating the bloody soup they deliver! I'm sorry you are facing this x

Thank you everyone who responded to this thread earlier this month.

Right now, we are just waiting for a few test results, but the diagnosis is ALS.

I will be sitting down with DH tonight to start looking at all the overwhelming information there is to deal with. We have to decide how to tell people, and how much to share.

We are living in Canada. I will be contacting the ALS Society for support.