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?

But I'm pleased it's a condition that doesnt really affect her or stop her living a full life with normal life expectancy.

You're not qualified to be 'pleased' about anything in relation to your sister's condition though! You don't live with it and you don't know how it makes her feel!

I would have said methotrexate too. Have been on it for 15+ years.

Reminds me of Curtis on coronation street.

Is it Essential Thromocythemia

Or possibly chronic myeloid leukaemia. Though hard not to be sympathetic to the stress of living with that hanging over you, though good prognosis now (with daily tablets!).

Myelodysplasia?

In any case, methotrexate isn’t a trivial thing.

Is it a chronic leukaemia that she has? If so you are being very unreasonable.

@How2Help

Is it Essential Thromocythemia

Or possibly chronic myeloid leukaemia. Though hard not to be sympathetic to the stress of living with that hanging over you, though good prognosis now (with daily tablets!).

We’ve had three years of hell with my DH and CML. It’s not an easy thing to live with especially if you don’t respond to treatment as well as expected.

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

Never had issues so far, but I bet she has a fair bit of worry over those blood tests because they're looking for something that might change.

To say it's like a hobby is very unfeeling.

Difficult for people to reply I think.

Many of us have similar conditions which, although not cancer, mean we have to take chemo medication - perhaps as a pill once day. Those of us with chronic illnesses learn early on to live with a while host of symptoms and medication side effects that would cripple 'normal' people, to the extent we forget even to mention it.

However, yes, if she's making stuff up and exaggerating for sympathy then obviously most people would agree with you that it's at best, distasteful. But what are we supposed to advise you to do? You say you can't raise it without a massive up, so your only option is to distance yourself and let it go over your head.

I get that you don't wish to disclose details and its all very well asking people to take your word for it, but that's not how people think when they see a bit of evidence in a post which suggests another side to the story.

Sorry, but...that's the way it is.

So, either you're being a little unreasonable because you don't realise the truth of her situation or you're not. In which case, I agree wholeheartedly and it would wind me up no end.

You're unlikely to get the agreement you're looking for, though, without being more explicit.

How often do you see your DS? Do you know for certain she feels well?

Some drugs can have side effects that are worse than the conditions they are treating - DMARDS such as methotrexate/azothiaprine and biologics such as Humira. They can make people feel utterly wretched - crashing headaches, sickness and/or nausea, crashing fatigue.

One pill at night can make people feel like hell, depending on which drug it is and how they react to it.

@madisonbridges

I have a friend who died of cancer a couple of years ago after a grueling illness. I have a relation with leukaemia. He takes no medication. They're watching and waiting. So his cell numbers are acceptable at present, but who knows what they will be like next time he's tested. He is very worried and tries to take of himself with his diet and social distancing. Occasionally I might pull his leg but I have never looked down on him for being scared at about his future or talking about his illness. I am always supportive because who knows what might happen. Because a friend died of cancer, it doesn't mean I can't feel sympathy for someone who, thank god, hasn't died and who hopefully won't.

You do realise that leukaemia is a cancer? What are you pulling his leg about?

Quarterly check ups at a hospital at the moment? When they've been cancelling appointments wherever possible for the last couple of years? It's unlikely to be nothing serious.

Quarterly checkups with bloods? You know that means they are concerned right? Bloods taken that frequently aren’t a joke. They are keeping a very close eye on her. It’s exhausting and incredibly stressful. You are being very harsh.

Hi tamarinda, I've had the same condition for 4 years. Manageable with regular 6 week bloods check. I do get anaemic every so often and more tired than before but otherwise doing well. There is a slight chance it can develop into leukaemia in later years.
To the op, it's not ideal and your sister may have anxiety regarding the condition and how it was explained to her. I had a hefty booklet tossed across the table by my first consultant. He was so abrupt and dismissive of me, I changed hospitals as soon as I could. Apparently I should have received counselling as it Can, although rarely, be life-changing. Give your sister some slack.

It’s impossible to tell as you’re refusing to say what her condition is, which is fair enough but does mean nobody can make an objective judgement.

My sister enjoys illness. That’s the only way I can put it. She has arthritis in her hip that has definitely been a problem for her over the years but absolutely nothing like she portrays. She does a strenuous work out every morning at the gym that I couldn’t do yet hobbles around if we’re out and about. She can climb into the back of the car from the front & she can go for walks up mountains on holiday but links someone’s arm & shuffles around her local supermarket where she’ll definitely bump into someone.

I’ve watched her sob in front of friends & relatives about how disability has limited her life & stopped her from enjoying her children.
It’s intolerable and eventually I had to distance myself. I’m not saying the whole thing is a fabrication but a lot is. It’s depressing to watch and listen to.
Perhaps don’t say anything but just pull back a bit and definitely don’t assist with any over dramatisation. I stopped going to get my sister out of her side of the car for example & miraculously she became quite able to get out herself.

@WantonRadish

I'd rather not name the condition as it might be too identifying and lead to a fall out.

I do take the point that it's not nice to have any condition. But I'm pleased it's a condition that doesnt really affect her or stop her living a full life with normal life expectancy. I think she should appreciate that too, rather than going to great lengths to present herself as a sick person.

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

I'm guessing polycythemia Vera. Classed as a cancer of red blood cells but managed with venesection and medication.

@WantonRadish

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

It does affect her day to day life. She takes strong medication every day.

She has regular check ups. Presumably that’s because of either the damage the medication could do to her organs etc, or the fact it could stop working (or both). Both of which are worrying things to deal with constantly.

Even down to things like people have to be very careful with contraception with drugs like methotrexate is an everyday impact.

She may be over playing it, but your lack of empathy is also way OTT.

OP I get where you're coming from. It's the behaviour that's wearing. I don't think the seriousness of her condition is the focal point. I have little patience for people who seek attention and play victim when they're sick. I find it really irritating. My dad does it - he's a complainer - and his mother was the same.
He could be in the company of someone with cancer who didn't complain and was stoical and dignified, and if he had flu he'd be on death's door & would expect sympathy and attention. It is distasteful behaviour. (BTW I'm not suggesting that cancer sufferers should be martyrs.)
It makes it hard to take seriously if things were to get bad.
I felt like it's boy-who-cried-wolf territory.
Obviously you know that your sister has a potentially very serious condition but that doesn't warrant the behaviour.
Sadly, as a lot of PP have pointed out, there seems to be an epidemic of 'look at me / poor me' in recent years.

How do you know her condition and the medication doesn't affect her? It sounds like she is telling you it does but you don't believe her!

Methotrexate stopped my periods so I’d advise anybody to be careful if they’re
Planning a future family

OP - you don’t know how awful it is to take it, I feel like I am poisoning myself each week. Pills come in a scary black foil and ate bright orange. You’re not allowed to touch it with your fingers. The drama around taking it is very upsetting and difficult to get used to.

It’s wrong to let people think you’ve got cancer if you haven’t.

However you don’t sound sympathetic. You can have a chronic illness and be dependent on unpleasant treatment like chemo and not be “obviously ill” to people around you.

Why are you so bothered by it? Are you jealous of the attention she is getting? Let her do her and you do you. You have no clue what she is really going through or feeling. Some illnesses can be quite invisible from the outside. Also if she is taking medication that is a form of chemotherapy there is certainly something wrong with her physically. You might find her talking about her illness distasteful. I find it distasteful that you have made a thread about her that almost comes across as you gaslighting her about her illness. Do you do that to her irl too?

I have Chronic Myeloid Leukaemia which sounds very similar to OP’s description. It’s a cancer (albeit a very treatable one), for the majority of people it’s a condition they’ll die with rather than from. Treatment is a tyrosine kinase inhibitor tablet everyday. It’s heavy duty stuff. I look fine, I go to work but I’m beyond tired most of the time with bouts of bone and joint pain, occasional nausea. There are people who suffer worse side effects than that. It is a chemo tablet and blood cancer patients are considered CV. I’ve had to have three COVID vaccines rather than the normal two. I’m not saying this to moan. I don’t want any pity. I’m just trying to say your sister may well feel very ill at times and be worried about her future. CML doesn’t go into remission as such. The best possible outcome is that the TKIs get the leukaemia down to an undetectable level but it’s almost always lurking there. Maybe give your sister a break. If she does have cml going around telling people she doesn’t have cancer is not fair.