DS giving impression she is seriously ill (and isnt)

[WantonRadish]

Name changed.

My sister has a blood condition that doesnt affect her day to day. She is fit and well, but she takes a pill every day and technically it is referred to as oral chemotherapy. It is not life limiting.

She has quarterly check ups at hospital. They take blood, she gets results immediately, never had issues.

This is my problem - she refers to the condition as cancer, posts on social media about her chemo, references her condition in most conversations, talks about how vulnerable she is.

I'm finding it very distasteful and am losing any respect for her. I have friend and family who have had cancer, they've went through gruelling chemo, they've spent nights wondering how many months they had left, their lives were turned upside down.

I feel like my sister is seeking attention. She is presenting herself as a cancer victim. She is very selective about what she shares, always designed for maximum drama.

I've had 6 years of it. I was sympathetic at first but now it's become like her hobby and I'm sickened by it. If think if I voiced my opinion that would be the end of our relationship, and I dont want that.

Am I being awful? Has anyone experienced this?

@WantonRadish

But it doesnt affect her everyday life *@TabithaTittlemouse*! She takes a pill at 6pm. That's it.

You don't know that. Until you have walked in her shoes you can never know that. From her behaviour I would say it does.

I've taken a form of chemotherapy for something that wasn't cancer that was just a pill every day (Cladribine for MS so not to be vague!)
It was only 5 days at a time and for two years, and although it doesn't sound like much after each treatment I could barely get out of bed and function for a few weeks each year.
But am actually with you on this, you see her regularly and can see how she's affected- when I was on my treatment I was always apologising to people I saw for not being my normal self and not quite being "with it" and it would have been obvious even if I tried to hide it.

I don't see how we could possibly have an opinion, unless we know the diagnosis.

I have very serious medical conditions which mean I’m considered extremely vulnerable in terms of Covid, all my appointments have been made into phone calls since early 2020, normally I have blood tests twice a year, and this has been changed to once a year and at my local drs not at the hospital now. My point is that for your sister to be having blood tests once every 3 months means she is very ill and they are concerned her condition could deteriorate very quickly. It may not be cancer but that doesn’t mean it isn’t serious or that it isn’t impacting her everyday life. Just because you only see that she has to take a pill once a day doesn’t mean that is all she does. She most probably has (understandably) anxiety that her condition could deteriorate and she could become much more seriously ill than she is now. Maybe she doesn’t show you her anxiety, but I’m guessing it affects her more than you are aware

If its MGUS then it can be a pre-cursor to blood cancers. She sounds like she's over exaggerating the situation at the moment but it must be stressful having blood tests every 3 months that could show the condition has become cancerous.

There’s also something very unpalatable about insisting someone is less ill than they say they are.

Given the last couple of years, anyone who has a pre-existing condition or who regularly takes medication that may affect their immune system has every reason to be anxious.

And so many people with chronic illness are dismissed as “fine, they are milking it” when really they struggle a lot day to day, physically, practically, mentally and emotionally.

Would you swap places with her?

Why is everyone acting as though the OP doesn't know her sister, doesn't know her diagnosis, doesn't know her prognosis, and doesn't know how the meds affect her?

Of course she knows all these things. She knows what the condition is, she knows it doesn't affect her DS's lifespan and quality of life, and knows that the meds don't affect her. She sees her at least weekly, and she's her SISTER.
Yet randoms on the internet who don't know her from Adam seem to think they know more.

This place is insane sometimes.

You honestly have no idea whether it affects her life or not.

@SpookyScarySkeletons, OP is her SISTER! They see each other all the time, they go on holiday together. She's her SISTER! What on earth makes you think that OP doesn't know whether the condition affects her sister's life or not?

Jeeeze.

You're unsympathetic. It's unsurprising that she doesn't share more details with you about her symptoms, etc. You do not have strong medication and regular monitoring if you're 'playing' at being ill. She is ill. She's entitled to post about it.
You seem to have compassion fatigue. The fact you resent her illness doesn't mean it doesn't exist. Even the limited information you have provided here, supports her view of her condition.

i think you need to put a bit of space between you and your sister or you could end up saying all this to her and destroy your relationship.

She does sound like her illness is a big part of her identity and she's focusing on what she sees as the challenges she faces rather than the fact that she is able to do, so i'm not surprised your have compassion fatigue. can you mute her on social media so you don't see what she's posting on her condition, if friends call with queries about her just let them know that she was in good form last time you saw her and change the subject.

i don't think you're a bad person for finding her annoying, you just need to work out how to reduce the irritation, as you are obviously close in some ways

Why is everyone acting as though the OP doesn't know her sister, doesn't know her diagnosis, doesn't know her prognosis, and doesn't know how the meds affect her?

Because she hasn’t said what the diagnosis is.

It may be as simple as one pill a day and she’s fine. She’s lying or inferring that she has cancer because “chemotherapy”

Or it may be that her diagnosis is actually cancer, and yes, while she may be physically fine now, psychologically it will be taking a toll. Hospital check ups every 3 months are done for a reason, they will be looking for either progression of disease or for any damage done by the medication, which may mean she has to come off it, then her illness won’t be controlled. In which case this “attention seeking” may be genuine worry and she’s reaching out for support. The meds may be leaving her CV.

Without more info it’s impossible to say. I think the majority of posters are preferring to believe the second case, and someone pretending to have cancer would be pretty sickening.

I don’t think o/p will come back now. She’s been asked to name the condition/drug but won’t. Without that people wan’t make a judgement about who’s BU

@saraclara

Why is everyone acting as though the OP doesn't know her sister, doesn't know her diagnosis, doesn't know her prognosis, and doesn't know how the meds affect her?

Of course she knows all these things. She knows what the condition is, she knows it doesn't affect her DS's lifespan and quality of life, and knows that the meds don't affect her. She sees her at least weekly, and she's her SISTER.
Yet randoms on the internet who don't know her from Adam seem to think they know more.

This place is insane sometimes.

Because it's really common with invisible illnesses and disabilities for even the closest friends and relatives to either have no idea or downplay the condition. Really really common. Proximity and time spent with someone do not correlate to understanding.

@saraclara

Why is everyone acting as though the OP doesn't know her sister, doesn't know her diagnosis, doesn't know her prognosis, and doesn't know how the meds affect her?

Of course she knows all these things. She knows what the condition is, she knows it doesn't affect her DS's lifespan and quality of life, and knows that the meds don't affect her. She sees her at least weekly, and she's her SISTER.
Yet randoms on the internet who don't know her from Adam seem to think they know more.

This place is insane sometimes.

The OP is downplaying a condition that’s so serious it’s monitored quarterly, despite the pandemic. And is monitored using quick turnaround bloods. Those two things are not used for nothing conditions. Especially at the moment.

So, given that it’s incredibly common for family and friends to not get how hard their relative’s ‘normal’ is it’s pretty fair to assume the OP is downplaying (deliberately or subconsciously) the impact on her sister.

Like others have said this sounds like an MPN. Whilst you can live with them for years they are not trivial things. The chemo can eventually not be enough even when topped up with venesection, the grind of hospital appointments is wearing, side effects of the chemo tablets and the MPN itself aren’t fun.

For sure lots of people can put a brave face on it and trundle along day to day quite happily but behind the scenes, at the end of the days, in the run up to hospital appointments it can be a different story.

@Sort0f

There’s also something very unpalatable about insisting someone is less ill than they say they are.

Given the last couple of years, anyone who has a pre-existing condition or who regularly takes medication that may affect their immune system has every reason to be anxious.

And so many people with chronic illness are dismissed as “fine, they are milking it” when really they struggle a lot day to day, physically, practically, mentally and emotionally.

Would you swap places with her?

But people do exaggerate and fabricate. This is widely documented. It is unpalatable, yes, but the solution is not to pretend it doesn't happen!

It's a very challenging issue because, as you say, chronic illness is so challenging anyway, and often poorly supported. But I don't think that's a reason to ignore the ways in which many people do manipulate and fabricate in order to benefit from 'the sick role'. Those behaviours, by extension, have a very negative impact on others with chronic illness.

But people do exaggerate and fabricate. This is widely documented. It is unpalatable, yes, but the solution is not to pretend it doesn't happen!

Again though, the o/p has asked us to comment on her side of the story only. We don’t know the meds, or the condition, so it’s impossible to say wibu here. It may be fabrication, or it may be genuine.

@saraclara

You honestly have no idea whether it affects her life or not.

@SpookyScarySkeletons, OP is her SISTER! They see each other all the time, they go on holiday together. She's her SISTER! What on earth makes you think that OP doesn't know whether the condition affects her sister's life or not?

Jeeeze.

Please don't "Jeeze" at me. It really is incredibly rude.

I have a disability and serious health condition. If you asked my sister she would tell you that I'm doing great and coping really well. She doesn't see the truth of how badly I am coping and how much pain I am in every day because I choose to keep that to myself.

@Nomoreusernames1244 The PP to whom I replied was commenting in more general terms, as many others have done throughout the thread. I agree with you that it's very difficult to evaluate OP's situation without full info - I doubt she'll come back to the thread now, anyway.

A friend of mine takes what you describe for rheumatoid arthritis. It can make her feel pretty crap sometimes but she'd never claim to have cancer because she takes a chemo drug. I can see wit that would grate if she's saying such when you know it's not. Could be very upsetting for others

Also, whether or not this fits your definition of what cancer should look like it is cancer. It will be impacting your sister in many ways - things like travel, medical and life insurance, changing mortgage or job etc. All probably doable but generally not without extra hassle, expense and very tedious having to explain to people who do not understand the disease.

Also assuming an MPN there’s a reasonable chance she is CEV and unlikely to have responded well to vaccines - that’s all just added stress on top of every 11 weeks starting to wonder if the next round of blood tests will be ok.

Just because she didn’t need surgery and lose all her hair to IV chemo doesn’t mean it’s not a massive stress and head fuck. Maybe she needs people to understand a bit more about the whole impact of this on her life and mental health and that it’s not just chucking back a tablet once a day.

A very close family member of mine has leukaemia and it's managed with a daily chemo tablet.

It makes them feel sick daily and has zero energy.

When they got the diagnosis it was as scary as any other cancer diagnosis would be and there's always the chance it'll return/become worse again.

So if your DSis is the same then I do sympathise with her.

OP there are forms of cancer which you can hold at bay by daily medication as in your sister's case, or regular IV chemotherapy (as in the case of a neighbour of my mother's who has some sort of blood cancer and has treatment twice a week, every week). The latter sounds much more onerous than taking a tablet, but presumably taking a tablet every day is in attempt to ward off the need for more debilitating treatment.

Some people are attention seekers, but if she's one of those, if it wasn't her health she'd be seeking attention over something else. Has she done that in the past or does she seek attention in other areas too?

Yabu. Maybe it was people thinking it is nothing that makes her want to highlight it. Quarterly check ups are an indication it is not as straightforward as you make out. There may be a lot of stress waiting for results to check all still well.

If my sister was behaving like that I would be giving her some attention not criticising.

if friends call with queries about her just let them know that she was in good form last time you saw her and change the subject

and tell them to call her to ask how she is, rather than the OP!

People deal with things in different ways. Some soldier on, some need to get all the support they can to get through general life (let alone an illness). If you sister is really getting on your nerves then try to distance and stop reading all her posts etc. Concentrate on making your own life about what you want to enjoy and your close family rather than thinking about what she is posting or conveying about her condition.