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Autoimmune disease

To think unless you've an autoimmune problem you don't understand?

129 replies

HCantThinkOfAUsername · 07/09/2017 21:06

Willing to be told IABU.
I've SLE and a few other things going on.
I feel so incredibly lonely and my friends and family just seem to be fed up of my constant medical dramas. I HATE being like this.
Dp goes through stages where he is understanding and supportive then back to being fustrated at how much life has changed for us.
Is it just one of these things that you don't understand unless you have?
Anyone know how I can explain it to people?
Tried spoon theory already.

OP posts:
Grumpbum · 07/09/2017 21:11

I understand. I bore myself most of the time once I say how I really feel. Personally I hate the spoon theory as it's just another 'thing' to make me seem special.
I cope mainly by not saying anything unless I'm in lots of pain then I concede. The tiredness I just muddle through. Luckily I have an incredibly supportive manager and family. It sucks so much sympathy

HCantThinkOfAUsername · 07/09/2017 21:14

grump Flowers
I think that's a good idea I should probably not whinge as much so they will take me more seriously when I'm really bad Blush

OP posts:
Autofillcontact · 07/09/2017 21:15


iklboo · 07/09/2017 21:17

I've not got an autoimmune disorder but one that has frequent flare ups and flattens me. I get the feeling everyone is running out of patience with my 'episodes' (boss made air quotes) and think I'm just being mard / putting it on to get sympathy or time off work.

Grumpbum · 07/09/2017 21:17

Sorry if that sounded like I think you're whinging, I really didn't but I found that after diagnosis every time someone asked me how I was I ended up moaning and one day I listened to myself and realised I sounded boring. So now I only vent on the intolerable days

Apocalyptichorsewoman · 07/09/2017 21:18

I don't know, but I completely sympathise. My sister had systemic schleroderma. It wrecked her body and because it was rare and autoimmune most people had no idea what it involved and how badly it affected her. Neither did the HCP's. She was under the care of many different professionals because of the impact on various organs /systems and it was really difficult to get joined up care and a recognition that she was heading towards end of life. I struggled to explain it myself to people and she fell between so many gaps in terms of support and help. I wouldnt wish autoimmune stuff on anyone xxc Flowers

weegiemum · 07/09/2017 21:19

I have a neurological autoimmune disease and try as they might, most people don't get it at all.

minoandolphin · 07/09/2017 21:19

I've a DH and DM with autoimmune disorders. People without it CAN understand. Many lack the empathy or patience to bother trying to though, unfortunately.

Apocalyptichorsewoman · 07/09/2017 21:23

Sorry - I might have killed the thread with my bitterness Blush x

MyPatronusIsAUnicorn · 07/09/2017 21:23


I have ME, had it for years. I've only found my DH and my nan to have any sort of sympathy or understanding. I don't talk about it much unless I'm declining something because of it or trying to explain why I can't do something. They just don't get it though.

Even now I'm going back to work, have explained to 1 friend that I'm a bit apprehensive as it is more hours than I wanted to do and she has just told me I'll be fine once I get used to it. Same friend also told me taking up a martial art would be good for me.

I manage a gentle exercise class (that's more intense than it looks) which is run by a friend and when I've expressed concerns over how I may feel at times I get a "oh you'll be fine."

There was initially a mix up with my working hours and it looked like they may ask me to do 30 hours instead of what I've agreed, I was telling a friend and she said "oh well that's ok." ARRGGHHH, No it's bloody well not and I'm already pushing it with 22 hours and my responses are starting to get a bit snappy as I'm so sick of having to state yet again that it's just not the same for me.

HCantThinkOfAUsername · 07/09/2017 21:24

grump no it didn't come across like that! My employer made a comment today that I'm a 'glass half empty" person even though everyone says the opposite.

So sorry those that suffer too. It's fustrating when those close to us don't understand or even HCP. I'm just given painkillers on top of painkillers.

Sorry I've not done individual replies, on the app and brain fog is major tonight and can't remember what else I was going to say Blush

OP posts:
HCantThinkOfAUsername · 07/09/2017 21:25

horsewoman no you haven't at all, it's lovely that you sympathise and your sister has someone understanding Flowers

OP posts:
MyPatronusIsAUnicorn · 07/09/2017 21:27

That makes it sound like I talk about it a lot. I really don't. I'm honest about having it but I rarely mention it. People just expect me to be able to just get on with stuff like everyone else can.

BatSegundo · 07/09/2017 21:29

YANBU I don't think anyone who is not chronically ill will understand.

I prefer gorilla theory to spoon theory.

It doesn't help with explaining illness to others, but it does help me be more positive when I start getting maudlin and angry about what my life could have been like.

Flowers for you OP

HCantThinkOfAUsername · 07/09/2017 21:31

unicorn no I completely get what you mean! Today was my first day back after a month off (TIA and flare) and they couldn't understand how I was exhausted after 3 hours and made me feel stupid.
Just even working is hard enough with this so hats off to you x

OP posts:
teaandtoast · 07/09/2017 21:31

I think it's true of any pain or medical problem. I have severe migraines with sickness and sometimes diarrohea. People say, 'Oh yes, I hate having headaches too.' They haven't got a fucking clue. I've seen at least 2 threads on here where people have been taken to hospital because they're in such pain. Turned out to be a migraine, cue the 'I didn't know they hurt so much.' Welcome to my world.

So you can try to educate, but the bottom line is, people just have to believe you. And often they don't.

Jezzifishie · 07/09/2017 21:32

I have ME and ulcerative colitis. It's so frustrating explaining to people - no it's not just stomach cramps, no I don't feel better if I just take a nap...

Acopyofacopy · 07/09/2017 21:32

I hate the way that autoimmune seems to mean "imaginary" to most people Sad Maybe it's because there are so many things shoved under that one umbrella.

I don't tell people what I have (very rare). Nobody understands it, too many people offer some kind of quackery that will "cure" me.

HCantThinkOfAUsername · 07/09/2017 21:32

bat ooh I will look that up - thank you.
I'm the same. It winds me up! I'm 25 and feel about 75 it's horrible. Bad days I feel someone else should have my DC so they can have a better life.

OP posts:
Apocalyptichorsewoman · 07/09/2017 21:38

Oh Bless you - please don't feel like that!! Am sorry that work aren't being understanding - could you do a phased return? SLE can affect so many parts of you to varying degrees. I completely relate to the lack of understanding though x

PickAChew · 07/09/2017 21:39

Oh, I love the gorilla analogy. Not autoimmune, but I do have a painful, often physically limiting and often fatiguing condition and that sums it up perfectly.

My gorilla is quite housetrained, these days, but it's sitting on my lap, right now and trying, extremely clumsily, to massage my neck, after a long week.

cluelessnewmum · 07/09/2017 21:44

My sympathies with all on this thread with autoimmune disorders.

I don't have this but I have a different chronic condition that impairs my ability to work, socialise, be the parent / partner I want to be etc.

I understand your point OP about your dh resenting how much life has changed for him as well, mine does as well. I can't help thinking that he looks at all the other healthy, problem free wives of his friends and laments his ending up with me (my condition got bad after we got married). I feel the only people who accept me for who I am now are my parents.

Agree with pp that it never usually makes it better when you talk about it, people rarely say anything that makes you feel better about it.

MipMipMip · 07/09/2017 21:47

I have ME and was told by one doctor "if you tested positive for x y or z we could do something but you don't" . another, usually better, doctor felt I was being too negative when I said my life was rubbish and told me "you need to see it differently - if someone from Syria had your life they would think it great because they're not getting bombed." Really fucking helpful.

Sorry, being a bit ranty but I'm bad right now and there us nothing anyone can do. I've signed up to CBT so they can at least see I'm doing everything suggested .

iklboo · 07/09/2017 21:50

I love that gorilla analogy.

holdthewine · 07/09/2017 21:51

Have you seen the section in MN called "Autoimmune" under "health". There are quite a few of us there and we all
understand how you feel. You're not alone OP! It's called something like "nice to see this here".

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