Feel like everyone is sick of my health problems

[flyingpancakes]

Pre-warning that I'm currently feeling fairly sorry for myself!

In the last two years I've been diagnosed with both stage 3 endometriosis and coeliac disease (the latter only a few days ago). Between them it's been two A&E visits, one emergency surgery, one planned with complications, multiple scans, a colonoscopy, multiple blood tests, an endoscopy and countless appointments and specialists with more to come.

On top of this I've had a chronic anal fissure for the last 6+ months, chronic constipation for a year (hopefully the coeliac!) and am getting three wisdom teeth out on Friday.

I feel like everything has been dumped on me all at once. I believe I generally cope quite well, but when I have a down/"this isn't fair" moment - which I think is natural!? - I never quite know who to talk to. If I'm very upset DM is great, otherwise very practical. DP seems to just want to solutionise and tell me it's not too bad...or goes the other way and is telling me that I should be shouting at the NHS to get things done more quickly. Not so good at just giving a cuddle even when I specifically state that's all I need and want. Very very few of my friends have had any long term health problems yet (I'm 23) and although sympathetic for a while don't really get what it feels like and how ongoing it is, despite trying to explain to them.

I don't want them to be able to understand as this is a bit rubbish. But I don't know what to do when I just want to list out complaints and be miserable for a while! Is it reasonable to want to just complain and be sad sometimes? Any suggestions?

Lots of empathy from me. Hopefully your coeliac diagnosis and subsequent diet adjustment will help you feel a lot better very soon.

I too have a list of chronic complaints. I think it can help to tell people around you what you want from them.

Your loved ones want to help, so when you tell them how lousy you're feeling, it's understandable if they instantly come out with their (actually rather unhelpful) solutions.

So to avoid this, tell them you just want them to listen.

Secondly, maybe try not to complain too much to them. Instead, join online groups for your condition and discuss your issues with people who genuinely understand how you feel.

Hope your health improves soon.

I sympathise - health problems can be very lonely. Can you join any groups for people suffering the same as you?

How are you getting on with Coeliac diagnosis? I have been diagnosed a few years so happy to chat/answer questions

Hi all. Thanks for the responses and empathy! I was a bit worried I'd get nothing back and feel even worse

I've been an active member of a Facebook support group for endo for the best part of a year now, have never been to an in person meetup but only realised they existed after I'd had my surgery and (thankfully, because it's not always like this) felt MUCH better.
I joined two coeliac FB groups a few days ago as well.

I don't think I've generally been particularly complainy apart from when in constant pain pre-surgery. Yesterday it was more trying to explain to DP why I was a bit worried about eating out, why I was a bit upset bakeries would never be the same again etc and I got "well we don't eat out much anyway and there's lots of things you can still eat" which I know is true, but he didn't understand why I'd still want to check which chains are good - we don't eat out much no but it's not never. And when I do I don't want to get ill!

I almost feel like I'm not allowed to be a bit gutted/frustrated there's yet another thing because that imposes on people and makes them have to think about it? Does that make any sense? Everyone's great with practical stuff but if I'm just a little down (not crying, complaining, etc, just a bit meh) then that's not as okay.

@SheldonSaysSo excellent username! I was diagnosed less than a week ago whilst on holiday so didn't start to change diet until yesterday. Helpfully I'm now travelling for work this week so I've packed my suitcase full of GF snacks and will try my best with meals! I'm going to experiment with GF baking next week. It will be fine I just want people to understand it's a huge change in mindset suddenly not being able to eat anything - even though the actual change to my food won't be huge!

Some people won't get it no matter what you say or do (unless they get ill themselves then suddenly they are on board). It takes a lot of adjustment for us let alone other people but your partner is trying at least. Mine frequently does things for me without checking and I get annoyed that he didn't let me try to do it. The less I do, the less I can if you get what I mean - he is getting there bless him.

I struggle with food and travel and I feel it makes me a boring friend so mostly just meet people for a coffee and a catchup. I have lost a few friends who I am sure will feel bad when they are old and ill and realise what they did but I have also made some new friends too. I have online support groups too which is fabulous as they ALWAYS get how we feel.

You are doing well - pat yourself on the back! (The teeth problem is at least temporary yay!)

@allypally999 I completely get what you mean, I was similar pre-op, except I wanted him to magically know when I did or didn't have energy. Oops! I'm glad he's getting there.

Yes, so glad that a reasonable amount is temporary or at least side effects of not following a GF diet as I didn't know to.

My update is that I've had two salads today as it was the only thing I could find for lunch, then I was exhausted from flying this morning and couldn't face going and trying to ask multiple restaurants - in very non fluent German - what was gluten free! But I did take myself off to a wool shop (knitting and crochet fan) and ask multiple restaurants so I know for the next few nights, and also found a shop and bought some GF lunch foods to take into the office and avoid buying the same salad every day! Because 1 that's boring and 2 expensive!

Sat on the hotel bed with a face mask on now. Think I'm doing okay.

Oh! And my sister bought gluten free crisps (specific ones, I know some 'normal' ones are too - bought pom bears this evening!) to try for me and has also added gluten free flour to her next shop to try and bake things I can eat. It honestly means the world.

That's good - you are making great progress already. I'd always have a tiny snack with you when travelling - avoids long explanations and language difficulties. Cake makes everything better!

Is there an app with 'find GF places' for travellers? Gap in the market if not.

I think you have to accept that it is really quite annoying and very boring for other people to have to hear about all your ailments. This may sound quite a brutal thing to say but it is best if you accept that this is a common human failing. It would be far better if you can attempt to be stoic and try to put a smile on your face.

@Toofle Coeliac UK has an app that does that! Looks very useful...unfortunately I'm currently in Germany for work. Maybe there's a German one I don't know about though!?
@jeanne16 yep, pretty brutal. I get where you're coming from although I hope not everybody suffers from that particular human failing. Maybe I wasn't clear in my original post: generally I think I'm pretty damn good at sucking it up and carrying on. On the few times that I'm not I do not however agree I should just always suffer in silence. I've had some good suggestions of support groups etc from others, and hopefully I can find a balance where I don't intrude on others too much, but also keep a good balance me tally and emotionally for myself.