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Autoimmune disease

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Original poster

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:
Wherearemymarbles · 07/09/2017 21:53

Autoimmune diseases are vile and share one thing in common.

Non are curable.

Some are easier to treat than others and some have less impact than others. But you if you have it you have it for life and generally they get worse with age.

And the scary thing is things like sle and ms are hardly better understood today than they were 25 yesrs ago and a cure is certainly no closer.

FusionChefGeoff · 07/09/2017 21:55

My friend has a new diagnosis so I'm keen to read / understand as much as I can - and that gorilla blog is brilliant! Thanks

CloudPerson · 07/09/2017 21:56

I don't have any autoimmune stuff going on, but I have low energy levels due to autism and a need to manage anxiety/energy etc in order to do the things I need to do.
IME when it comes to invisible stuff, people don't get it unless they've experienced similar.
I'm not even sure there's an adequate way to explain it, because unless something physical can be seen, you might as well be persuading them that black is white. It's like trying to shift a mindset to a whole other dimension which simply cannot be comprehended.

gleegeek · 07/09/2017 21:58

I've got ME, migraine, some sort of digestive issue they're yet to investigate properly and various other bits of me that don't work properly.
Recently after another relapse I was referred to a health psychologist. After a few sessions, I can see that it might actually be useful... she is very astute and has begun to unravel how my physical health is affecting my mental health. I am grieving for the life I thought I would lead, carrying massive amounts of guilt about being a burden and push myself to try to look 'normal' and that I'm achieving something. She says I have a bullying brain!

Chronic illness is miserable and it has stolen what makes me 'me'. No-one in my family really understands and I've lost count of the diet tips/exercise ideas etc I've been given which will 'cure' me.
OP - we understand! Try to be kind to yourself x

CloudPerson · 07/09/2017 21:58

Sorry, my post above wasn't meant to compare autism to autoimmune conditions.
I'm not making light of how relentless they can be, more that I've found there are similarities.

CloudPerson · 07/09/2017 21:59

Similarities in how you are treated by others I mean

Jezzifishie · 07/09/2017 22:04

I get what you mean cloudperson :-)

PickAChew · 07/09/2017 22:06

I have 2 kids with autism, cloudperson and I understand where you're coming from. I know for a fact that it's bloody exhausting being DS1. He has relatively minor physical stuff going on, but is so heavily drained by being around people and, because he's not drooling and flapping, people expect far more of him than he can manage (eg assume he's rude when he's unable to speak to them). His gorilla is sitting on his shoulder, poking him in the face, screeching in his earhole.

MyPatronusIsAUnicorn · 07/09/2017 22:07

Cloud I have aspergers too and I have noticed an overlap in my ME symptoms with how I am feeling being related to my aspergers. Sometimes I have no idea which one is causing how I'm feeling.

MipMipMip · 07/09/2017 22:14

BTW I realise ME isn't an autoimmune disease unless it is since noone knows but I think both it and fibro have enough crossover with autoimmunes to be relevant, at keasst for this discussion.

BigSunglasses00 · 07/09/2017 22:22

YANBU. The only people I've ever been able to have an understanding chat with are people who have had similar problems.

Have you looked into support groups at all? I know that they exist for SLE, maybe see if there are any in your area?

I don't really have any advice. In terms of family though (wider, not your DH) I think lowering your expectations regarding how well they'll ever understand it might be helpful in terms of self-preservation. It sounds sad, and it is, but I know I'd just be disappointed if I tried to bring it up with certain people so I just don't. I answer questions briefly if they ask, but I don't 'open up' to people about it because I know their responses wouldn't be helpful. I don't expect them to get it, really, so I never end up disappointed.

That sounds really dark, I don't mean it that way! I just think that trying to 'get people to understand' can be futile, and maybe just another thing to stress over and maybe a waste of spoons Wink.

You have my sympathy though Flowers

GlitterNails · 07/09/2017 22:34

Yes, it's true unless you have complex health issues yourself, it is just impossible to understand. I wouldn't specify autoimmune exactly.

I often get people who have injured themselves saying 'Now I know how you feel.'

Well no, as pain is just one symptom of god knows how many, and you will get better. But I appreciate the sentiment, they mean well!

I don't think anyone truly can understand it really unless you've been there yourself.

SunnySkiesSleepsintheMorning · 07/09/2017 22:37

YANBU and not to be dismissive to people with other conditions but there's something about systemic inflammation that makes you feel just hideous. It's known to cause fatigue, pain and low mood. It's not describable to those who don't get it.

I hide my issues far too much, I know. I've been told. I just feel people won't understand and I keep it to myself which I know is to my own detriment.

I try to take each day as it comes because they are all different. It sounds trite but it's the only way I keep going.

I have buckets of sympathy for you. Flowers

EnglishGirlApproximately · 07/09/2017 22:44

I have urticaria Vasculitis, which presents itself as hives. When I'm having a flare up it has a huge impact on my general health - I can't sleep, I'm in constant pain and I feel lethargic. As it looks to the untrained eye like a skin condition I get endless helpful recommendations of things like E45 cream. I get that people don't understand it as it's such a rare condition, so I try not to speak about it much but when they know I'm under consultant care I do wonder what makes them think their advice is helpful. One person even suggested meditation as a cure 🙄
Thanks OP

EnglishGirlApproximately · 07/09/2017 22:46

sunny you're right that it's impossible to describe. People just imagine it's a bit itchy when, in my case at least, I feel like patches of skin are being stung by dozens of wasps continuously for a few days until it dies down.

PointlessUsername · 07/09/2017 22:48

Yanbu.

I long to be the old me.

user1496259972 · 07/09/2017 23:01

I have an autoimmune (MS) and it sucks but I've found no one gets it until they have one themselves. I keep it tucked inside, rarely tell anyone and smile away. Don't even get sympathy from my Mum. I keep reminding hubby when he moans, says I'm always tired or calls me grumpy that my immune system is working 5 times (not accurate but makes the point) harder than his so of course I'm damn tired. I feel like I'm fighting the flu all the time. And that doesn't even factor in the repairing/healing part or the extra energy to do stuff while dealing with impairment. Lots of love and sympathy to you, it's a tough lot to be given xx

TeatimeForTheSoul · 07/09/2017 23:04

Thank you for suggesting the section on the health board.

I'm sorry but it's such a relief to know there are others who feel misunderstood like me.
I have had autoimmune problems for 20 years and CFS/fibromyalgia/ME every medic calls it something different. Every time I have a glare up it I get the 'it's mental health' treatment from work. I wouldn't mind if it was mental health but it's like they're implying when I can't hold a mug in my hand, or hobble around the building, that it's all psychological.

Lucyandpoppy · 07/09/2017 23:26

YANBU I have crohns. Was diagnosed at 13 and have had sepsis 5 or 6 times since then as well as many hospitalisations and going in for a drip of drugs every 6 weeks for the last 8 years. Recently have had a spate of infections and accesses (and sepsis, again!) I found, especially at 13 but even now at 23 that most people find it incomprehensible to have an illness that is so ongoing and that you don't get better from, but also don't die from. Just kind of very long term sick.

Lucyandpoppy · 07/09/2017 23:28

I am lucky that my mum 'gets it' (as much as you can without actually being sick yourself) because I lived at home for the first 5 years after diagnosis so she has seen me at my worst

Lucyandpoppy · 07/09/2017 23:31

I think people find it unrelatable if they haven't experienced it themselves. I try and find something common that crohns is 'like' when I'm explaining it to people so they can draw on their own experiences and empathise. So I would describe my crohns when it's active as being like food poisoning and the flu mixed together but every day for years 😂

MiraiDevant · 07/09/2017 23:38

I have also had severe migraines since I was a teenager. All my life. Every two to three weeks. Three days in bed vomiting and in so much pain it's unbelievable. Loss of sight, hearing, the ability to process stuff. Lost days. Yes weddings and Christmasses and exams and weekends and holidays. An entire weekend in New York once. And I didn't leave the room and couldn't bear to have the lights on.

And people say "Yes I get migraine headaches" No you fucking don't! Not like this! (But maybe they have something else - that I wouldn't understand)

So maybe we should all try to understand a bit more but also to keep our problems to ourselves unless we really have to explain because while you are explaining your illness the person you are explaining to may well have something horrible that they are dealing with that you don't know about.

So sympathies OP - it must be rough but most conversation is mere gap filling - no-one says anything of real import in those sorts of exchanges.

kateandme · 07/09/2017 23:45

Sympathies hun.have u tried any mindfulness meditations.mindfulness pauses and body scan or breathing techniques have been little savings in times of great pain.

Gudgyx · 07/09/2017 23:55

Posting in solidarity.

I have Crohn's and rheumatoid arthritis and they both suck. I'm a very positive person though so tend not to moan about it. My response to people worrying about me is normally 'I'm fine, worse happens at sea!'

I have a bag now though, and on home injections that help both Crohn's and RA so am as okay as I'll ever be right now :) tired as shit but I can cope with that. And bag leaks have never phased me, just something else to find hilarious and laugh about.

Morphene · 08/09/2017 01:47

I think most people who have suddenly had their planned life ripped away from them should be capable of understanding....no matter how that happened. But then lots of people lack empathy.

I would find the people who 'get it' and steer clear of the others (or at least remember who they are, because they need avoiding under some circumstances) - its too tiring otherwise.