Some Illnesses Are More Deserving?

[GoingPotty39]

Prompted to write this by another post (didn’t want to derail that thread) where the OP has cancer and was wondering if she could ask friends for practical help. Lots of posters saying yes and that they would gladly help and have actually helped friends in similar situations. If I were the OP’s friend in that situation I would definitely want to be asked and would certainly provide practical/emotional support as much as possible. Same for a friend with any illness/in need.

On to my question, are certain illnesses seen as more deserving of attention/support from friends and family? Certainly funding varies wildly between certain diseases, with those mainly affecting women sadly receiving generally far less funding for research.

My perception is that certain types of illnesses tend to galvanise more support from friends and family, whereas as others not so much.

In my case I have a serious health condition where I went from fully active to only being able to work a few hours a week and largely housebound. I have been underwhelmed by the level of practical and emotional support offered from close friends. Although I very badly impacted, the illness is “invisible”.

So I’m interested to know if others think there’s a difference, perhaps depending on whether it’s s well-known illness. finite recovery time vs chronic condition, visible/invisible disability or physical/mental health etc.

YABU-no difference
YANBU- there is a difference

She’s not a friend. Friends would listen and be sympathetic and concerned for you.

Absolutely. Online, people talk about delivering meals. In reality, it nay have been two meals five years ago

So, Op gets the impression that everyone else is getting support, but that's not really the case

Any fundraiser will tell you some conditions are seen as more deserving of sympathy.

There's a diabetes charity that has interesting fundraising as type 1 and type 2 are seen as having different rates of deserving-ness. Don't get me started on raising money for poor people in UK versus rest of the world (you get responses of why do they have so many children etc)

It's the same for everything. Some wildlife causes are hard to raise money for.

Can you really say if the shoe was on the other foot op, you'd keep up with a sick friend weekly? Even with best intentions, life gets in the way. Have you found any support groups with other people who have your condition?

That's terrible. I'm so sorry your mum has this to deal with. How unprofessional, from ambulance staff. Do you/your mum correct people?.

I am another IBD parent and its a tricky one. Lots of pointless dietary advice, lots of people assuming it's gone away or he'll grow out of it. And then you have the poo angle, that really disturbs some people.
Serious illness shouldn't ever be comparative.

But also what if it WAS alcohol related? Does that mean she'd be less deserving of help THEN? My mum died of liver disease. It was caused by alcohol abuse but that alcoholism was caused by the trauma of child SA.

And honestly I don't really know what "help" people are actually being expected to give. People have their own lives. It's not their friends or neighbours responsibility to look after them even if they are unwell. I would offer short term support but I don't have the time or headspace to take looking after someone long-term. It's unreasonable to expect it IMO. I don't believe if the shoe was on the other foot the OP would either.
I have kids, a job, my own aging family members to worry about. And I'd like to have a small amount of time left for myself. The occasional hand here or there? Of course! But a long-term commitment? No way. When my granny was very ill the amount of support I had to give her along with everything else in my life almost gave me a breakdown.

@Nsky62 yes I agree, neurological conditions are hugely under publicised. DP takes a cocktail of medicines daily to try and slow it down. He may lose his driving licence too. His condition as it is now, is probably more debilitating for him, than my cancer.

I think a lot of the ideas people have about 'community' or 'friend' help comes from a time when women didn't work outside the home. Women did a lot of informal work and care for neighbours and friends without any pay. The 'pay' was knowing someone would likely return the favour if you were in need. People also had larger families and were more likely to stay in their place of birth. Most people had better networks.

@BellissimoGecko thank you. We do but there have been times where we've been treated as though we're lying - I've been told she'll be able to be helped faster if I stop pretending she's not drunk any alcohol that day (whilst she's been completely incoherent/screaming with pain) - and when I've argued she never drinks I've just got 'well, it's liver disease - that's caused by alcohol' and then ignored. It's interesting because there's a stark difference in how we're treated with her specialists/regular blood appointments etc, where people know the details, and how we're treated in A&E/by paramedics (unfortunately these are common scenarios for us to be in 😬)

@Shwish I'm so sorry for your loss. I agree it's not anyone's fault if they are alcoholics as well - and the way I've seen inebriated people treated in A&E/triage (and how we've been treated when that's assumed of DM) is awful.

@Shwish, no, of course it doesn't mean such a patient would be less deserving. I'm sorry if I worded that clumsily. And I'm very sorry for your loss.

They really are and a huge cause of disability in working age people. It's very hard having an invisible, fluctuating illness that affects so many aspects of life. Balance issues, fatigue, brain fog, bladder and bowel issues, sexual issues, depression, vision problems. I try to stay positive but worry about losing my eyesight. My hearing already fluctuates. But I can still work part time and I won't give up on life. It's just hard when people don't understand why I can't be the same person I was before or find my limitations irritating. They're much more irritating for me because I'm with them 24 / 7!

Neurological issues get such a tiny fraction of research and resources. I'm very grateful for the research J K Rowling has funded into MS and more recently MND. People with my condition are seven times more likely to take their own lives. I try not to think too far ahead. New treatments are being developed. I have a family who love me. I have much to be grateful for.

Dementia, like cancer, is very common and although lifestyle factors make some difference most of it is luck +/- genetics which amounts to the same thing.
People have sympathy ("It was awful what happened to your dad. Such a cruel illness") but they also have the fear. It's embarrassing for a lot of people to talk to a person with dementia at all stages: early on it takes a bit of skill to smoothly gloss over mistakes and remember not to ask "When , who, what" type questions that involve recall; in the mid stages if you're not used to it, it's embarrassing answering the same question 5 times in a 15 minute conversation as if it was the first time and dealing with the vacant zone-out moments as if they are normal or not happening; and in the end it's hard going trying to have a friendly "chat" with someone who is almost non verbal and probably doesn't recognise you.

I would think a lot of people who talked to dad from mid stage on (not that many visited him in the dementia care home where he was for the last year and a half, with some notable exceptions) climbed back in their car thinking "good grief that really is a shoot-me disease, I hope to god I dodge that one." Nobody is going to look forward to the next visit, I used to get a sinking feeling and have to brace myself to be cheerful typing in the code to get in the security door on the way in.

@Jabtastic I completely relate to what you are saying. I find it exhausting and frustrating having to explain over and over again why I could do something one day and not another.(although it is one person in particular now that is the issue for me). But I have to plan what I am doing in advance, plan to rest before and rest after, DH will take some of the strain by for instance the driving as then I can just enjoy what I am doing at our destination, if I'm lucky and it's a good day I may get to spend the day enjoying myself (with regular rests) if I'm unlucky I may only be able to enjoy a short while before the fatigue or pain takes over.

What people don't see is the previous day where i have had to ensure I rest and the one to two days after (on occasions longer) where i have to recover from doing what someone without MS can enjoy without even thinking about it.

Sometimes I'm too tired to even eat or hold a conversation, if I'm with family it's fine they understand but with friends it's difficult because I come across as rude or disinterested when in fact I'm too exhausted to engage, so I avoid some social interactions so as not to look bad.

I work it's incredibly important to me and I do still have bills to pay, but sometimes when I've had barely any sleep because of the pain I can't cope with customers and would rather just be left alone but with chronic illness you get very good at pretending your fine when your really not but faking it is exhausting in itself.

I have been told I'm progressive now, I can't do what I used too, I still drive but only locally as driving longer distances can wipe me out and exacerbate the pain.

I have a friend who lives in my old.home town 130 + miles away i used to visit and go out and have lunch or doing something nice, that friend doesn't drive or work and has always expected me to ferry them around, choose what we do etc. I can no longer do that, I don't have the energy or the head space any more, yet I find myself having to repeatedly say "I can't do that now" when I said I'm now progressive they asked what that meant and I explained AGAIN and they said "ok well.just let me know when your better and we can do something" i wanted to screaming "I'm.not getting better do you not understand?"

I feel like I have to wring every moment out of life that I can and I do try to because I don't know what future is and it's awful having this hanging over me but that doesn't mean I'm cured, feel fine or I'm not in pain I'm.just trying to find ways to do things I.enjoy.

I've not had a chance to read the whole thread but will just make a couple of points.

a) People with cancer don't necessarily look ill. I've had major surgery for two separate primary cancers (bowel and endometrial) in the last six months but I both look and feel fine and unless you saw the scars on my abdomen you'd be none the wiser (both were symptomless and detected via routine screenings).

b) I think the request and offer of practical help is often most associated with certain types of cancer treatment - radiotherapy in particular requires daily attendance at hospital for sometimes several months, with potential side affects such as severe tireness that prevent a person driving themselves. I'm not aware of many other illnesses that require such intensive treatment as outpatients and offers of lifts are really useful.

Absolutely.

There’s also a lack of understanding that a lot of chronic illnesses aren’t easily diagnosed. I know of a few where the average time to diagnosis is at least two years which means two years of going back and forth to GP and sometimes A&E desperately begging for someone to work out what it is and being symptomatic but for the entirety of that period being viewed as a hypochondriac or medical anxiety.

I got sacked from my job last year. My cancer treatment left me with several chronic conditions and it took around two years to identify exactly what was going on and be treated for it. Work were very good about the cancer but once I told them honestly that the cancer was in remission but I needed time for rehabilitation all the patiencecsuddenly went. Fair enough they couldn’t wait for me to get better because they needed to fill my place but the way they spoke to me was very much that I was being awkward and CHOOSING to be ill. I was very upfront about doctor visits, hospital visits and tests. I’ve since done SAR and my manager was having meetings about me theorising that I was really just depressed after death rather than even considering the chronic illnesses were real. My union rep was genuinely shocked at how they spoke to me at one point when I was only a few days out of hospital when they had to stick me on a drip overnight.

Shockingly about six months after finally identifying the main one and starting treatment everything else is much much better. But identifying it was an absolute nightmare.

(Sorry that should be after family death. I am not dead.)

There's definitely a hierarchy of illnesses. Cancer stands at the top - but lung cancer at the bottom of that group. 'Do they smoke?' is without doubt the first question people ask, rather than the somewhat kinder 'How are they?'
At the bottom are the really invisible illnesses. Depression is much misunderstood despite extensive media coverage/accounts by celebs. People still come out with the painful and cruel 'just look at so & so who has it much worse' advice.
Lowest of the low though is ME and the similar but not the same chronic fatigue syndrome. You'll be lucky to get a doctor to take you seriously let alone your friends.

This is a really interesting thread. Seems to me there are a variety of factors. Cancer is common. That means most of us have some sort of idea of it and the potential seriousness. It's also quite concrete and imaginable the idea of a lump or a tumour. It's like a very solid idea of an illness. (I know not all cancers are like that.) The other thing is that many of us will know someone who has been affected. We often have an image, like with breast cancer, of midlife mums with potentially lots of life ahead with children and families. This strikes us all to our hearts as we all have mums and we all imagine how awful to lose our mothers early. Those that are in the same life stage imagine the horrendous fear of leaving children or not seeing them grow up. How often do you really see very much older people with breast cancer publicised? I suppose our sense of extreme unfairness is easily triggered by the first image, plus the idea of dependents.

(I am aware that some people with cancer might be reading this. In my own life most of the terrible losses too soon have been to cancer so yes it is right up there in my mind too, whether that is fair or not. But I'm also aware that there is so much hope in this area, things are changing, treatments improving , some cancers can be cured and others can be held at bay for really long periods of time.)

I would say people are being a bit unfair about heart disease. We have vastly concentrated on heart disease and the improvement of information, and treatment has lead to far better stats and outcomes. There is some argument to say we've been so successful with heart disease that this is why dementia is now the leading cause of death instead. So I don't think heart disease has been under-funded or ignored.

I am really shocked and horrified at hear about children with serious less publicised diseases getting less attention and nice things to take their minds off things in hospital than those with cancer. That does not seem right at all and maybe there should be more generalised children's charities that care for all children who have to spend a lot of time in hospital no matter what the illness.

I don't know how funding works. Is it a hierarchy like you say or down to how common certain illnesses are? Back to breast cancer, this is one of the most common cancers so many many people will be touched by it and this will lead to more fundraising in honor of relatives or friends that people love. With a less common debilitating disease there will naturally be less wide-spread awareness and fundraising will be linked to that.

Having suffered a chronic issue that has been and can be really bad but can wax and wane, I think it can be the case sometimes that one's world just shrinks down during the bad times and you can end up brooding on your condition a bit. I'm aware that talking about my condition is only of limited interest to others. It can be depressing to hear someone moaning or even just letting off steam or analysing their condition. I know I've done it myself to family who are stuck with me, but I'm very conscious about this with friends. People like to feel they can do something to help. So things that are ongoing and can't really be cured are hard to deal wtih for everyone. I'm also aware that it's important to keep looking outward and having entertaining or humorous or interesting things to talk with friends about and to let them let off steam, even if about day to day stuff. It might be that friends feel they can't get support from the person who is struggling, when that might not be the case.

Many people these days also have a lot of caring responsibilities for children and elderly parents in addition to workloads.

I don't know the situation of your friends, @GoingPotty39 . But rather than asking them to phone me a couple of times a week, which turns it into something like a commitment which can lead to hurt or disappointment, could you not just phone them yourself a bit more casually? Being open to it if it's not a good time. How did you interact before? Was it more fun and laughs or emotional chats back and forth? Has your condition meant it's become a bit one-sided or that you talk about different things? Friendships are often based on having things in common at different life stages and I've often found the intense ones can fizzle out as soon as the life stage changes and it can be the more slow steady ones that stay with you forever through thick and thin.

Would it be an idea to try and widen your friendship circle, even if that's friends online? If needing emotional support for chronic illness, could forums be helpful where there are others who have direct experience and where people can offer that support to each other?

I'm sorry to read about everything everyone is going through on this thread. It's not easy to read and my heart goes out to all. Many people don't have a clue how grinding it can be dealing with a chronic illness, condition or injury.

Ugh that's awful. I've had bad experiences with managers just patting me on the head and basically telling me not to be lazy! Even when I'm still meeting the same targets as everybody else. Always have to be more.

I have had 2 different tumours, one cancer and one benign but in a place which causes serious long term symptoms.
When I have been for checkups I often go to the oncology department for both sometimes the same room although different doctors.
If its a check up for the cancer I get given a cup of tea by one of the volunteers, if it's for the other tumor I am not allowed one.

I am astonished by that and saddened truthfully.

I had a family member with cancer. It was very obviously cancer, he was on the oncology ward and had months but because of the aggressiveness of the cancer was difficult to diagnose where it had started.

People with diagnosed cancers were entitled to a parking pass to the hospital so relatives could visit. They couldn't officially pin a diagnosis on him, even the post mortem wasn't sure what type of cancer. I had to have a breakdown in the ward before they would offer us a pass, and then after a month a jobsworth nurse refused to renew it.

For sure.
Over a third of females with lung cancer have never smoked.
The link between lung cancer and smoking is no higher than it is between breast cancer and drinking (for women). Nobody assumes that everyone that has breast cancer caused it by drinking too much but everyone assumes if you have lung cancer you caused it by smoking; you’re own fault. It’s easier to think that than to think anyone with lungs can get lung cancer. That’s too scary to acknowledge.

People say things like that because they don't want to be negative to the person who is ill.