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.

I also hate the Spoonie thing, I don't want to be defined by having autoimmune issues, over 20 when wrote them down for someone. I also hate how it's a competition to be the sickest. We're all ill, we all feel crap, there are no winners!

I have maybe found one person who is google crazy & wants to know everything that's up. For ex H I feel sorry he had to go through such hell. Seeing someone get worse as I did. I think with partners we need to consider how they're coping as it must be tough. I've had friends go NC as they just didn't know what to do. So God knows how those who love us feel.

If you ever need to talk PM me. 🦋

It's so hard. I had MS, I say had because I had HSCT and now thankfully MS is gone, but the bone crushing fatigue, the heavy limbs, the brain fog is still a not so distant memory.
I used to get pissed off and frustrated at myself, I think that's normal. It's really hard.
Unless you have experienced it I don't think anyone gets it iykwim.

I don't whinge and not taken seriously when I do moan and I'm at breaking point by that time. It just sucks. I'm sorry you are struggling.

The spoons bollocks. Every time someone mentions it I get the urge to beat them with a wooden spoon.

The brain fog, the fatigue and the uncertainty of it all. Unable to plan because you never know when you'll relapse.

When you wince and someone asks if you're in pain. I'm always in pain. Just sometimes it gets so much and the bugger leaks out.

It's just an immense bag of shite isn't it? I have RA and systemic scleroderma and it feels like being cursed.

I think often it's because the autoimmune disease doesn't manifest in anything obvious. Mine is ITP, which means basically, my blood doesn't have the usual amount of platelets, and I get very tired and very bruised. However, I have no meds, nor will I until count is under 10k of platelets, or I am bleeding out all over A&E. My sil recently has an optical autoimmune disease which requires meds, prevents her driving etc, and db told me that I had no clue what having an autoimmune disease was like. Of course I don't...I've only had one for 22 years, triggered by pregnancy. Grrrr.

Hashimoto's here (underactive thyroid), I had a bad spell recently where hypo was turning hyper so medication needed adjusted and that makes everything worse, tried to explain to colleague who had asked how frustrating it was that I would have to choose not to do things I wanted to do - complete blank look and non comprehension.

I have rheumatoid arthritis and I wish it was called something else. If I tell someone, I invariable get "aren't you a bit young for arthritis?!" (In 28, was diagnosed at 21) or I get "oh I know how that feels! I have it it my thumb" when they mean they have a touch of osteoarthritis which is worse in the damp. I usually smile and nod but no one really knows how painful it can be sometimes. I'm currently pregnancy and having a flare up and I'm very wary to take any medication so I'm tolerating it at the moment. Fortunately my DH and close friends are very loving and understanding.

TBH, with rheumatoid arthritis the pain isn't always the worst bit- it's the constant fatigue and the flu-ey feeling during a flare that upset me.

Plus I can't even get any of my shoes on today and feel like a 90 year old....

I have endometriosis and ME and now skirting a new diagnosis (possibly fibro, lupus, a thyroid issue...). It's not an exaggeration to say it has ruined my life. First it ruined my relationships, then it stole my career. It ruined my experience of the pregnancy I waited so long for and now my worsening health means I can't even pick up my twins without being in complete agony. People have no idea and never will unless they've experienced similar. My mum used to give me such a hard time, then she developed stomach and ovarian cancer and although her health was ibviosuly far worse than mine, in the early days her symptoms and mine were frighteningly similar and a few months in she broke down and apologised for not supporting me through my 20 year battle with endo and additional problems later. She had to feel the pain and fatigue to get it,obviously I wish she never had to go through it - I wish she was still alive and being mean about it! It did completely change our relationship while she was alive though. I have literally no one in my life who understands beyond online friends who have the same. I have no close friends any more, they vanish eventually. My husband is good but I get that even he is fed up with it now - it must be bloody tedious, I get that. No one wants to talk about it but I am tired of saying I'm fine when I'm not, so here we are.

Saw this and thought it was relevant...

Jessica and Cakes - I'm another RA member. In the states they're calling it Rheumatoid disease to disassociate from osteo. I know osteo is just as painful (have it in damaged knee) but people don't understand the way RA / RD flares and moves around do they?

I don't know how to link to the auto-immune support page in 'Health' but its title is "Nice to see this here". Hope to see you all over there.

To be honest until you've had a condition it is difficult to understand. I've been off work for several months with secondary cancer. I'm due back soon but am dreading the assumption that I'm now cured and will be back to my old self - no - I will never be cured and the treatment I have to undergo to buy more time leaves me exhausted and in constant pain. But people do not want to hear this.

scaryteacher Interesting about the pregnancy triggering it for you. Pregnancy triggered my MS and I've met others with MS also triggered by pregnancy.

I have Psorisus, psoriatic arthritis, osteoarthritis and rheumatoid arthritis. I use a crutch to walk now which means people are more likely to sympathise but, for me, the often excruciating pain is nowhere near as bad as the utter feeling of fatigue and exhaustion.

Even the simplest tasks leave me exhausted and people don't seem to understand why.

Pregnancy also triggered my Hashimoto's, but I've long had PCOS, insulin resistance and adenomyosis, and there is a connection.

I have two friends with RA, and a friend with Sjogren's, and as inconvenient and awful Hashi's is (for me, I go dreadfully hypo in winter, with stomach problems, muscle pain, fatigue, hair loss, insomnia and brain fog) I consider myself fortunate when compared to my RA friends.

I go to great lengths with healthy eating, exercise and nightly magnesium salt baths, and sticking pretty rigidly to this keeps me mostly ticking over.

I've found the person who is the most understanding of literally everyone is my mums neighbour, who is in her nineties. She is just starting to struggle with age related stuff now, and says that she can't imagine what it is like to have her pain and tiredness, but in a late-twenties (at the time) body.

Second pregnancy triggered here. Was talking to someone recently, wondering if there was a link with my rh- body carrying a rh+ child...?

Much sympathy to you all. It's not on the same level but I was diagnosed as quite badly hypothyroid and anaemic in my twenties. My thyroid just stopped working one day after a nasty bout of flu, I was hospitalized for two days I felt so crap. People think my thryoxin is like a vitamin, and some thing I insist on taking like some weird kooky supplement or something! Or I'm weird for insisting I take it every day or take it on holiday with me. I understand the iron is kind of like a vitamin substitute but I have to take it! I don't even talk about it really but at work recently I was feeling rubbish. I take iron 4x a day at the moment and was feeling nauseous as I didn't take with food as too busy. Vomited copiously in the toilets and my manager accused me of pretending! Also if I say im tired, I must get my thyroid checked as sometimes I go and the levels are way out of whack and I feel foggy and tired, someone will say "tired? You're not tired. Try being me I have to do x,y,z blah blah blah"
Ive been told I'm a "joke" for getting free prescriptions. I never get paracetamol or anything on the NHS I buy it from the shops so, as not to take the piss.

I've been told "you won't have to take that thyroid stuff forever you know bet it is back to normal in a couple of months, they give pills out like sweets these days" when I know it probably won't go back to normal function.
I've been accused of it being slimming pills also and had to make the accuser google it!!

I know it's not the same as having IBD or Lupus or Diabetes or ME but its so annoying especially when you're young and live am active life to be basically disbelieved so I have so much sympathy for you all!

I also eat very healthily and make sure my B12 and D3 are good.

Please mention HSCT to you friends with RA, it can work for that as well as MS, I think other autoimmune disorders too but I can't remember them all now.

Ps that makes me sound like I broadcast it to everyone I really really don't just if people see my take it on a hen do or group holiday or at work my manager will say to the team I'm at the drs or something if im not in and it brings it up!

I'm in my forties now and have had ME since my teens and have been recently diagnosed with arthritis. My disinterested doctor has vaguely mentioned Fibro as a possibility, but my surgery seems to have a
policy of keeping folks like me from bothering specialists at all costs. I agree with other posters about the huge impact illnesses like these have on lives, a huge cost in terms of quality of life, career, achievements, travel, friendships, family and on it goes. I rarely speak about the ME but as I now have to use a stick to walk, my health issues have become visible!

I will move over to the health autoimmune board in a bit :)

Thank you all for your replies and sharing your experiences, for you all!

I hope I don't seem like I'm fishing for sympathy I just feel so lonely and miss you I used to be.

A bit embarrassing but to give some insight, my children were on CP plan, exh was abusive and my health was bad. After we split whilst still on the plan, social worker said I was one of the worst cases she has as I'm unpredictable with my health/hospital trips and it's affecting my children.
She said my children would be better off in her eyes with an drug user compared to me as they can control when they use..
Even though that was a while ago that gas stuck with me.

God sorry it's all coming out tonight haha! I've finally got somewhere to talk and be understood.

Actually it's under health/auto immune diseases

My god that's shocking! I am so sorry that was said to you.