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

[HCantThinkOfAUsername]

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.

My BFF has systemic Lupus. I can't tell you how incredible she is. She's a brilliant parent with a demanding career despite the associated exhaustion, relentless medical intervention, life-threatening infections and organ failure. She's lucky to have received an organ transplant and she's so grateful to have a second chance. I'm so proud of her.

Sorry, posted too soon. It's incredibly hard for her and there have been times when she's been on her knees. There was a time when we thought she wouldn't see her 40th. She's a stubborn bugger though and always determined to prove her consultant wrong.

I have multiple sclerosis. And unless you’ve got it, you don’t get it.

Same goes for most chronic conditions I would guess.

I found a very warm and welcoming fb group for other women with my condition. It’s been a whole new world of loveliness, acceptance and understanding I never knew existed :)

Flying I am so with you at HATING the fecking spoon theory!! If I had the energy I'd insert as many bloody spoons as possible sideways where the sun don't shine of the next person that suggests it to me! Sorry, rant there. But feck me, it really irritates me for some reason!

I have ME, Fibro and recently an as yet unexplained disc issue in neck causing severe nerve pain / issues into right arm / hand; used to be a dancer, with contemporary groups and an Irish dance troupe and fight for county in various martial arts and train hours every day, and now I'm fat and unfit and in pain every day, and even after 20 something years of it it still fecks me off that I basically lost my whole life and everything I loved doing.

Recently added pregabalin to the endless mix of meds, and seem to have been whacked by the 'may cause thoughts of self harm and suicide' often expected side effect, so putting up with life is even more of a struggle than usual and grieving for everything lost - future careers, sporting aims, beloved dance classes, never having kids, loss of relationships and all the other things I can no longer do, trying to rationalise the irrational feelings of the side effects so don't act on those thoughts. Add in the terror of possible DWP reassessment at any time, and it's a real struggle to keep plodding on right now

Love the gorilla thing, much more relatable than the spoon theory.
I've lost a lot of friends since getting ill, a lot of people couldn't cope with me cancelling plans or not being able to do certain things.
I've also had to bury a few in the garden for not shutting up about acupuncture

Hypothyroidism and inflammatory bowel disease here . It can be so disheartening when people gloss over it. I had one former boss make a very flippant remark about hypothyroidism being a fashionable illness. And my friends with babies who seem to think they have the monopoly on tired. There is no fatigue like autoimmune fatigue. It's like it consumes my entire body, and sometimes no matter how much sleep I get it feels like I'm wading through sludge. Add to that the weight issues, depression, constantly feeling freezing cold and a whole raft of other problems... people just do not get it.

I got RA for my 21st birthday. It sucked hard, and I quickly found myself avoiding telling people. When I felt well enough to work I was sent to the disability part of the job center and sent for a job interview with a charity as a receptionist. I got the job even though I really didn't want it, it sounded so tedious and in old life I should have been someone quite different. After 6 months of answering a damn phone all day they allowed me the privilege of opening mail too. One of the first letters I opened was from the job center about their payment for hiring a disabled person. Me.

I was heart broken and furious and humiliated. These people only hired me as an extra payment for their charity - I was a cheque monthly and a pat on the back for taking on the young disabled girl. I didn't see
Myself as disabled then. I guess I saw myself more like the gorilla wranglers. I felt like I would never again tell anyone about my RA.

I quit and went back to university. I didn't finish, but it gave me my confidence again. It reminded me I was not my illness.

YANBU OP to feel that others without a chronic illness just don't get it.

I think generally people just have no understanding.
People tell me I look well. Yes I do because I am on steroids so I have gained weight.
I catch everything going because I am intentionally immunosuppressed.
I wish I had a £ for every time I have been advised to take some sort of expensive supplement to "boost my immune system". No - that would make me much more ill.
Then there is the advice to join a gym, an exercise class, etc.
I would love to, but I would last 5 minutes then spend the rest of the day in bed.
It is tiring and depressing.

Thank you for this thread. I have learned not to talk about my illness with people other than my dp and one friend. It's quite lonely! But thia thread makes me realise that there are so many of us out there.

I am sorry you all go through this too.

I didn't realise there was so many of us. I'm on a few groups on Facebook but they are so big (10000s of people) that it doesn't feel like a support network.
I wish people in general just had some understanding to what we go through.

I didn't realise there was so many of us. I'm on a few groups on Facebook but they are so big (10000s of people) that it doesn't feel like a support network.
I wish people in general just had some understanding to what we go through.

Yes, I have two, diagnosed last year. It took me a few months to get over the shock and then 7 months to start feeling half normal and successfully manage.

I've also had depression, a marriage breakup, cancer scare and a change of job in the last 2 years.

Managing is hard. Reduces me to tears at times. I found out about spoon theory here. It's actually helped me understand managing things, rather than explaining to others.

I'm lucky in that with management I live a relatively normal life with few complications, but the burden of managing something constantly is pretty stressful at times. If you haven't, consider getting some counselling.

All I can say is that it's ok to feel resentful, angry or sad.

The only exception to your statement is if you have a child with autoimmune disease, or in my ds's case...mitochondrial disease. I have had the stupidest suggestions from my friends. I think the prize goes to the dad who said that the cure for my 10 year old ds' 6 week long migraine was to "just sign him up for AYSO" (that's American Youth Soccer Organization for those foolish enough to think that it might be a medical solution).
Or the teacher who, in front of the whole class, threw into the garbage the doctor's note stating that ds needed to NEVER be in front of a tv screen as they triggered migraines for him.
Or the many, many, many idiotic solutions that have been offered to me for ds' chronic fatigue.
I take great pleasure in presenting ds' very complicated (and mostly incomprehensible to everyone except his geneticist) genetic testing results to any disbelievers or "it's all in his head" nay-sayers.
It's truly awful, but Charlie Gard's story/death has given me a voice for my ds (who has the same disease, but a much milder version) that I never had before. I would love to be able to say that to his parents so that they know that their fight for their child was not in vane.

Coming away slightly, all of us with autoimmunes have had people telling us what we should do to ease or cure our symptoms. From slightly strange to outright quackery.

Does anybody else read threads on MN asking for a diagnosis from a bunch of random people and internally scream.....Go and see your bloody doctor, not ask this assortment welll meaning but unqualified people!

I wonder if mumsnet could move this thread over to the Autoimmune section so that future searchers can find it if they look there? Good (in a weird way) to know there are so many of us...

I have hashimotos and the fatigue can be debilitating. People just don't get it.

Mumsnet can this be moved to autoimmune? :)

And my friends with babies who seem to think they have the monopoly on tired. There is no fatigue like autoimmune fatigue. It's like it consumes my entire body, and sometimes no matter how much sleep I get it feels like I'm wading through sludge

Oh god THIS so much. Saturday I got up, walked to the supermarket, did the washing up - and then had to lie down for the rest of the day . There was so much I wanted to do - not even madly ambitious stuff- but I just had to lie there.

And people saying 'But you look well!'. FAT. I look FAT because I am on steroids.

Jessica yes, I found myself sighing tonight and thinking "I'm so tired" and I've been on holiday for 10 days! Today I haven't literally done nothing except pack my case but it's damp and my joints are swollen and I didn't sleep well last night.

I have a neurological autoimmune condition which has basically left me paralysed from the chest down. I have to use a wheelchair and can't walk at all. It's often said to be a non traumatic spinal cord injury.
If that's not enough I also have alopecia universalis which is also an autoimmune condition.
My own body hates me.

raspberry that is awful, I can't even imagine how you feel. It sucks :(

Thank you HCant

I'm quite a positive person but every now and then I do feel a bit hard done by. Especially when my eyelashes and eyebrows fell out too.
On the plus side I have lovely smooth legs that I don't have to shave!

I'm another with an auto immune disease (type 1 diabetes) and although managing it is part of my day I actually spend a large amount of my day dealing with it or thinking about it. Friends are fab but don't "get" it, family are fairly useless (diagnosed at age 21 and no longer at home) but I am friends with a group of similarly pacreatically challenged and the support from them is great, there's always someone on the end of a twitter or facebook rant and we meet up every month or 2, if you can find a peer group then they are worth their weight in gold!

@HCantThinkOfAUsername

Mumsnet can this be moved to autoimmune? :)

Moving now.

Thank you @lornamumsnet :)