Hi, everyone 👋 I hope this week – and the weather – has treated you well! (It's HOT here in Oklahoma.)
This week, I wanted to focus on the topic of relationships and pancreatitis.
Living with pancreatitis reshapes life in various ways, including how we interact with those close to us. It's a journey that often requires communicating needs, educating loved ones about the condition, and finding new ways to connect and empathize.
How have your relationships evolved since your diagnosis? Have you found certain approaches or conversations particularly effective in fostering understanding and support? Share your experience below. 👇
Written by
Skye_MC
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On the whole my friends and family are genuine people, and due to life-long health issues and abusive people in my past I've evolved to be pretty independent. I have too many immunity problems to be in regular social situations and mostly work on my own or with other vulnerable people so don't get challenged very often.
I'm more well since my dx, and therefore treatment, than I was before it, so I can hide the issues from people I meet casually and avoid dealing with things that way.
I've just developed a thick skin when dismissed for sleeping around the clock and needing to take tablets all the time.
Although always kind, I'm pretty unique and matter of fact so people tend to take my "it's how it is so accept it and get over it" attitude, without offense or question, and if they don't, I "get over it" instead.
I can't change reality and I know I do more than anyone else I know to manage my health to keep myself going optimally and this gives me the confidence that if anyone challenges me I can meet their challenge in a calm, convincing, matter of fact way: few people argue with the bare truth.
Sometimes I want to get upset at being sidelined - but it's usually because I'm too tired and I soon realise that I'd be better off asleep anyway! 😁
I guess the answer to your question is that I talk to people simply and factually on their level if I have to, but on the whole, although I don't hide my issues I manage them/my life so they have minimal impact on others.
I see it as being akin to being Type 1 diabetic and try to get on like they do: few people know who is Type 1 in their circles.
The other day I was doing donkey rides and in a quiet moment I started to eat a snack of celery and cucumber. The moment I swallowed a Creon capsule some customers turned up. I apologised for continuing to eat and said that my pancreas doesn't work properly so I have to take enzymes and must have a certain amount of food to go with them. I treated them with respect and as if they'd understand and they were fine.
If I get questioned about using a disabled toilet I quietly and confidently use the line, "not all disabilities are visible" and don't leave them with any option but to accept what I've said! However, if they persist, I ask them "do you want to know why?". Usually they're just causing agro and don't want to know so this makes them go away. If they don't, I do my best to engage with them on their level and again simply and factually briefly explain, thanking then for their interest.
The weather here in the UK has been somewhat changeable and has made harvest tricky but I'd rather that than intense heat - I hope you can keep safe.
Thank you for your discussion topic.
One thing I wanted to add (a bit tongue in cheek) in addition to my other reply is that some people's lack of will to be understanding of health issues drives me to want to say things like:
"I have a chronic health problem which I manage: you obviously have an acute empathy problem which would also benefit from some management"
"Before you continue to criticise my health management, maybe you should put more effort into managing your manners"
"Your lack of understanding is fixable, my chronic condition isn't: how about we work on the fixable problem first?"
And that sort of thing! Just thinking it usually makes me smile when they weren't expecting it as they were trying to be narky!
My Aunt who I look after and regularly have to eat with, thinks it's clever to sarcastically ask "have you got enough pills?" I always keep my cool but usually have some flippant answer I know she won't like, such as "yes, thanks, do you want some?" so she'll grump and back off for a while!
Most people genuinely don't understand, and respond to respect and kindness. Others are just inherently unpleasant and there's no good getting upset by them, as hard as it is to cope with them when you're feeling rough.
Asking questions like, "do you want me to explain so you can understand?" (when you know they don't!) and that sort of thing is more effective at returning their nonsense challenge than pleading with them to listen to you.
Loving the snarkiness, haha! But, I do agree that responding with the opportunity to educate can be a more effective approach to ignorance. Thank you for sharing. 💙
P.S. It's finally cooling down! I hope your harvest goes well!
My sister definitely thinks I make stuff up, I'm sure!!! Last year,I got discharged from kidney clinic because my kidneys have been stable for a while, AND the reason mainly was because I've been under 2 different hospitals for ages and the kidney team always said 'we'll ask Dr E' from the other hospital anyway. So,with that...my sister said 'oh,so you're back to 100% health now then.'...
Even though I have EPI...my elastase result was 15, totally uncontrolled diabetes because of the CP, a kidney function of 40 (I'm only 44) severe asthma, and all of my 4 different hospital consultants see me quarterly at the moment....
AND she's a nurse 😳 And I'm waiting for my next iron infusion! I'm like 'really???'
No problem - I totally sympathise, especially when she should know better. It's as if the real person is invisible. Perhaps you should congratulate yourself on managing your problems so well that you "don't look sick"! There are people who see you years down the line and are surprised when you say you can't do something because you aren't well enough - and they say, vaguely, "didn't you have something wrong once before....?"
The ones that require more patience than most are the ones who say, "what you need is...." something impractical, like "a holiday". No, I need to work and sleep! Every day. Day after day. Because it never goes away, and a holiday would just drain my resources, pose me a load of challenges and cause me hassle. I'm sure a holiday would be nice under different circumstances but I enjoy life more than they do without holidays, so who are they to tell me what to do! 🤪😁
Lol...yea,definitely the 'oh you're looking well!' I get told this all the time. Even sometimes a friend will send a message to ask how I am, and I think,I'm gonna answer honestly and spew everything out. And they reply 'I'm glad you're doing well.' It's like some people literally just don't want to know/see.. not in a malicious way...just in a denial kind of way!
Oh, that's so tough! I'm sorry your sister isn't as understanding as she should be, especially being a nurse! Just because you were stable in one area, doesn't erase all the other things going on with your health – not to mention, EPI, CP, and diabetes are lifelong conditions. 🤦
I think your example is exactly why it's important to have a support group like this one – because people here actually understand and get it. So, thank you for your rant, and don't apologize! I'm sure many people here can relate to this experience. I appreciate you for sharing. 💙
My husband and I are still getting to grips with my diagnosis in March of chronic pancreatitis. The CT scan I had showed it up. It scares me at times and I have been difficult to live with. Anger,denial,why me,I don't or rarely drank alcohol. I try not to think about it now except have changed to a low fat diet. I have mentioned previously I cannot tolerate enzymes. I have a more prominent disease if Rheumatoid arthritis although it's now in remission. First time for 17 years but I'm having tests in a couple of weeks to see if I have microscopic colitis. My family and friends are supportive but I don't go into too much detail as I want to be me and not defined by another illness
When I returned to work after being in the hospital my boss was not supportive. He had no patience for my limitations. I was finally put-on short-term disability and told to stay home for a year and get better. If I could return to full-time work, I was welcome back. Otherwise, I would have to stay on disability and apply for federal disability. I was shocked when I could not return to work full-time.
My husband has been great! He explained, these days people understand if someone gets sick with the flu or something and gets better. But when you have a chronic illness, they have nowhere to put that. Then on top of that, I don't look sick. I get together with people and do something usually sedentary then come home and take a nap. They see me take the pills, but don't know the nausea, pain and blood sugar struggles that I have to manage daily.
I've ended up with a whole new group of friends. My friends from before were not unkind, I just can't keep up with their activities anymore. My new friends understand, I have to pace myself. Life in the slow lane can still be meaningful.
I don’t know how many people tell me I don’t look sick. My sister keeps asking what size jeans I wear because I’ve become thin. Each time I tell her, “Believe me you don’t want to lose weight the way I did.” That said, I think she’s the only one of my five siblings who “gets” it.
And, to be fair, I do - I'm usually the right weight for my height (but have to work at eating to keep that way and not get too thin), I eat an almost perfect diet for nutrition and take masses of supplements (I'm qualified as an animal nutritionist, which helps 🤪) and always do all the right things - walking as part of my work, spend lots of time outside so am slightly tanned, do lots and lots of sleeping, etc, but that's just to try to keep going at all!
Still, I have to remind myself that while I do it just to keep going, if the trade off is not looking a miserable wreck (even if I feel it!) then I'll take that, coz I don't have any time beyond working, eating and sleeping to spend time making myself look good!! 😁
You so much have my sympathy and understanding though!
There's quite a lot of helpful stuff online under "but you don't look sick" and even "butyoudontlooksick.com" and "butudontlooksick.com" websites/for people to look at!
We're not alone - there are a lot of "invisible illnesses" and we all share similar experiences.
Those of us who "get it" - eg those on a pernicious anaemia Facebook group, wish each other "as well as possible", knowing that "well" is beyond reach and respecting it... And I extend that to you too! All the best!
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