Explaining Lupus to relatives and friends - LUPUS UK

LUPUS UK

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Explaining Lupus to relatives and friends

jimbo1605 profile image

My wife after suffering many years of illness was diagnosed with Lupus in December last year. Thanks to great doctors she is now living a semi normal life.

However, during her illness her family turned from friendly rational folk into the in laws from hell. They initially said she doesnt have lupus and there is nothing wrong with her despite her finding difficulty getting out of bed. (this was also said to my my wife which made her feel like a fraud and a failure). Then they blamed me for her illness that it was all manufactured, a mental illness and that I am responsible.

I have spent many hours trying to explain, I have given them many of the lupus uk leaflets (which are excellent - well done again lupus Uk). But they havent read or listened any of it and are stubborn in their ill informed views.

I have a lot of in laws and they hunt in a pack and most times it feels like we are under seige or attack at a time when we could do without it.

Grateful for you thoughts, experiences and suggestions on how to explain lupus to those who dont know and possibly dont want to know.

Incidentally my in laws are not bad people they are just ill informed and misguided.

19 Replies

Gosh jim: am totally relating to your narrative and am so glad you’ve posted! I’ve been here on forum for 7 years and know there are lots of us who will be totally relating to it too.This is going to be a fascinating & important discussion. I’ll be following it closely!

I think you are a true Hero: many here have partners behaving pretty much the way your dear wife’s family is! And here you are Stepping Up, right by her side!

In my case, my in-laws’ behaviour is a bigger issue than my own family’s, but my mother actually is convinced my chidhood onset complex pattern immune dysfunction + connective tissue disorder illness is all because i don’t pray enough. And i do have so-called old friends who still think i’m a hypochondriac.

I deploy all sorts of relationship coping techniques...possibly the most crucial is to stay close to those who really truly madly deeply DO understand our illnesses and whose modus operandi is respect + giving the benefit of any doubt + living by the Golden Rule. My feeling is that i’ve spent a lifetime proving you can’t get people to understand what they don’t want to...i make a basic attempt, with the help of LUK, and all those who make little effort to “comprehend” my illness end up being “kept at arms length”: my stamina, resilience & comprehension are too compromised, vulnerable and hyperreactive to risk wasting & straining them on blatently biased folk who have their minds & hearts set on being dreadful to me

But that’s just me, and i’m 64 + infertile and childless due to infant onset illness,..i’m living on the other side of the Atlantic from my family + the other side of the channel from my hero husband’s...and we’ve devoted our lives to rescuing dogs, cats, our countryside...and to encouraging those we respect & love + are respected & loved by...and this wonderful forum is my vvvvvv favourite of all communities

Am so glad you’ve found us! Thanks again for posting! Wishing you every best wish

🍀🍀🍀🍀 Coco

Bravo Coco! Bring it on! Such wise words and oh so true! 👏👏👏

THANKS ...am about to have to “deal” with the in-laws...so am sort of “in the zone” 🤣🤣🤣🤣

Good timing with Jimbo’s post to keep you focussed in the zone! Good Luck!! 🤞🤞🤞

THANKS again 👍👍👍👍

jimbo1605 profile image
jimbo1605 in reply to Barnclown

Thank you so much for reply and for being so frank about your situation.

I can also empathise with the suspicions that auto immune is caused by not praying enough. My in laws are deeply religious and are very judgemental and unforgiving for those who are not - in particular me.

It really helps to understand that we are not alone in our struggles and not mad for what we have experienced.

Pooh Bear and I (thats the wife by the way) are in awe or how much you and others and how well you cope and lived fulfilled and happy lives. Its great to see the support network provided by this forum helps so many people. In particular those who are more experienced in dealing with autoimmune share experiences with those who are not like pooh bear and me. For this I sincerely thank you and all those who have helped us both.

Barnclown profile image
Barnclown in reply to jimbo1605

You’re totally welcome jim...your deeply thoughtful reply and great sense of humour have made my day! I hope you & Pooh Bear will remember we’re always here 24/7 Right By Your Side! XOXO

I do know to a lesser extent how you feel jimbo . My own family lives far away and one of my sister did not really believe what i was going through and told me I needed to get out and exercise and id be fine , this was when i was in awful pain and exhausted . My in-laws never said anything but i did get looks and i had one embarrassing moment when i was really struggling and I burst into tears . I still have nightmares about it as i try to keep a ‘good face’ . My husband and my 3 sons are wonderful and supportive as they see what i have gone through , my husband is also great at encouraging me to do more when im having good spells . It is difficult to explain to people exactly how these conditions effect us as not many people have heard of them . Best wishes to you and your wife for the future and enjoy the good times together, sorry i have no answers for you , but keep doing what you have been doing 😀👍

😍💐😘🍀

What fabulous replies you have had Jimbo. Oh how this is a sore point with me, I don't know what it is about relatives who don't 'get it' especially when you have a bone fide medical diagnosis. Those who don't even step up after being given written information, particularly as you say in the form of the Lupus UK fact sheets, which are outstanding I agree, then in my world, they are beyond educating.

I love CoCo's reply and her stance, these days I do not waste my breath on ostrich mentality relatives, I concentrate on my day to day world, count my blessings for a supportive husband, and make sure we enjoy the good days I get, rather than getting upset and stressed with family members who think they know better than doctors, offer unsolicited medical advice, and generally get right on my bits!

You know the truth, so my advice, you have tried, no more can you do, just move on Jimbo and spend some extra time with your lovely wife.

I agree with other comments here.

I wasted time, and much needed energy, trying to get folk to understand. Like yourself, I handed out information sheets. No one read them.

My children are mostly, loving and supportive. They have families of their own. I don't want to burden them. God knows its hard raising a family and working these days!

My daughter bought me books on AI disease. My son helps with transport. They both try to listen to me when I'm down. I am grateful. I have another daughter who thinks I can think myself well. She is a Head Teacher. I blame the training! Lol. She is my daughter. I love her unconditionally.

I asked my children, why don't any of you read the information I gave you? Bless them, they said they would get too upset. It's been too hard, watching me their life loving, love giving mom, become so unwell and struggle. They also admitted, they worry my conditions may be hereditary and they can't face that thought. They, quite rightly, want to enjoy their young families. It's good enough for me, that they would be there for me, if I needed them because I lost all ability to cope.

My husband, on the other hand, truly cannot cope, or accept my illness. This does make things much more difficult for me. So, I do take my hat off to you. You have each other and that means such a lot and will get you through rough times.

Friends? I gained many who suffer too. I let many go....

I am of the belief, unless the NHS informs the public about invisible illness, provides clinics and care, such as diabetes, and heart rehab clinics, its not likely that invisible illness will be taken seriously, by many friends and/or families. Raising awareness through media intervention is so overlooked.

honeybug profile image
honeybug in reply to Supul

Very great reply Supul.

👏👏👏👍🏻👍🏻👍🏻👌👌👌

😊🌸🌿🦋🙏🤗💗😘

You are a good Man !!! ...My husband is almost as good xoxo...He is with me yet he would never each out to ask for help the way you have.

I am 63..DX'd at 62....my children grown so I do not have the daily grind of getting four girls off to school, or picking up after drinking late at night(my husband did the late night pick ups anyhow) arggg...glad those days are over..I would not have been able to do any of that stuff now...I do have grandchildren..so I know how it feels to not have the energy to be the participating grandmother as much as I used to be....

I feel lazy and guilty....I almost feel like I have to explain myself everyday...now I just say Lupus Tired...even though they have no way of knowing that kind of fatigue, they at least understand that it is out of my controll..so accept it/me..

Not praying enough????? makes me want to scream at anyone who says stuff like that..Hypochondriac?? Yes I actually am one..BUT I still have Lupus(Skin Joints Fatigue) not SLE... My Best to you and your wife

Xx

I know exactly what you mean. I think I would tell your in laws that perhaps they should read the leaflets you have given them and not bother offering an opinion on the health of your wife and it’s cause. You may also mention that their negative opinions and dismissive attitudes are making your wife’s illness even worse. If they don’t like that tell them to go and do one. They should support her.

I agree with all the comments and can sympathise a bit

I was diagnosed June last year and my folks have been great read all info given and asked questions my mum gets a bit grumpy sometimes when I need to cancel things but my dad has COPD so they are used to dealing with these things

My sister in law who was hard work anyway has suddenly developed all

sorts of medical issues (so far undiagnosed) as if it’s some type of who is the poorly ist competition and has recently become a raging medical expert - helpfully unfortunately she has a lot of influence over my mother in law who was widowed at 68 about 12 months before I was diagnosed- I have my MIL the same booklet from LUK as my folks but she has put it somewhere safe to read when she has time and instead looks at the half cocked web sites my SIL directs her to!

I decided a couple of months ago after almost totally losing the plot with my SIL that I would focus on those who offer genuine help (my team at work who look after me and send visitors away when I’m tired or so long distance meetings when I can’t drive) my folks my genuine friends some of whom have asked where they can find more info and my absolutely fabulous husband who has to juggle me against his sister and mum he’s been fab

You and your wife will be fine with us all hear to listen and encourage

Someone people are not worth the waste of breathe I believed that in some areas of life before lupus it’s on been reinforced since my diagnosis

Good luck and big hugs

Helen x

eekt profile image
eekt in reply to HelenL75

Yup, I know the competition thing: my sister was very smug at having an emergency GP appointment....to have her ears syringed?!? When she starts on her sore knee I cut her off 👋...she's been obese all her life

Fair well xxx

This is so common and so horrible. Your wife is very lucky to have you. Given their stubborn ignorance, I hope you and your wife can simply say that her physician and consultant have confirmed the diagnosis and while you understand it is hard to comprehend, you do not wish to discuss it any further. I have always found trying to justify my diagnosis to others distressing and exhausting.

Then again you could print out some of the threads from this site where people discuss how awful it is to be treated like this by family...

I would just like to thank all of those who have responded to my initial post - I didnt quite anticipate the level of response and how much a problem it is for many of you.

Pooh bear (the wife) and me have spoke frequently on this in response to many of your comments. Pooh bear is so named because she is blessed with a calm, happy go lucky character that can always see the good and the positive even in the worst. Me, I am more of the grizzly sort myself (of bear that is) inbuilt grumpiness with strong territorial traits and bears grudges (sorry about the pun). Its a good job for the world that i didnt get lupus or the world would never here that last of it.

Anyway my idea of issuing them a misbehaving ASBO was ruled out and we have decided a two pronged approach. I would speak with them, which I have now done and my wife would up contact with them and keep off medical issues. That way we maximise the Pooh / Grizzly traits to make them behave.

It is so comforting and supportive to know that we have an army with us even if the in laws are not. This makes everything so much easier to bear (sorry another pun).

On behalf of Pooh bear and grizzly me thank you all.

😁😁😁 I've been lurking on this post as I have family too un-bear-able to mention, but a HUGE thanks to everyone too, especially Jimbo for starting the post on a very difficult topic: I'm not alone! 🐻🐻 xxx

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