So I apologise in advance as this is a hefty topic. When I was first diagnosed at 32 years old I pretty much made the life changing decision that I wasn't going to have children. I dithered a bit, but it was a chance conversation with a chatty nurse taking my blood who happened to mention her friend had lupus which convinced me. She told me "yeah she had her kids before she was diagnosed and now really struggles with them and the lupus".
Since that day I told myself it's probably best I don't have kids. They say you should eliminate stress, I figured having a child is extremely stressful so best not. I also told myself I don't know if I'm going to be one of the lucky ones or if in 10 years time I'm going to be seriously struggling, so rather than risk being quite sick with a young child best I don't go for motherhood. I think I'm still of that opinion for myself.
But I have started to wonder if I might be able to maybe be an emergency foster carer instead. I am a caring personality and would have enjoyed having a child but my concern has always been the long term commitment needed when I have an unpredictable condition and the risks involved to a baby in pregnancy. But short term fostering feels like while it would be stressful it could also be doable and a more realistic option for me.
I just wondered if anyone else has made these types of choices. I know most people are diagnosed after they already have children so I'm sorry if this is a bit random or not relevant.
NB To people planning on having children post diagnosis - this is in no way meant as a judgment on your choices - this was just my personal thinking process as to what I think I can cope with and what would be best for my own future. I think anyone who has lupus and sjogren and decides they want a baby should absolutely go down that path and be the excellent parents I'm sure they'll be! It's more I just made the decision that this was likely to be too difficult for me, and I'm wondering if anyone else out there did the same? If anyone went for fostering or did something else?
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Insomniacette
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I had mine 2 before I was unwell and became I'll when mine were 21 &11 .it has been hard my youngest has become a carer for me ,spent the last year shielding with me and I often feel guilty that I havent been able to do the things with him I should of. There is one lady jennashi who is in the process of adopting she might be a good one to chat to. Xxx
Ah Spanielmadlady I always love hearing your thoughts - thank you for responding - there is always so much honesty and wisdom in them. Your 21 and 11 year old are so lucky to have you! Having someone who can advise thoughtfully and kindly like you do is a gift. Thank you xxx
Thank you insomniacette.. .makes a change from being called rude ( amongst other things ) by the anti vaxxers and the ' I'm not having it ' brigade 🤣....good job I'm thick skinned lol.
Thank you my daughter is 28 is a nurse with 2 children of her own and my son is 18 in the summer.the gap between them is because I had 6 years of treatment for endometriosis. my grandson I've only seen 4 times as he was born in 2019 just before covid reared its head. The last time i held him was feb 2020.
I read you are thinking about getting a dog.my 2 have got me through alot.my OH died in 09 in an rta when the kids were 17 & 6 and I coped by walking with millie (only had her then) I find their energy and enthusiasm infectious (but I've got a bonkers breed) they make me move and keep me moving because I know I have to.yesterday I was a head to toe in waterproofs and wellies (no photosensitivty issues 😅) had the beach to yourselves went out with 1 ball came home with 5 🤣. I go as far as my body will let me (I have been known to ignore my body and go too far 🙄) and more often then not it means I need a nap afterwards .as you know without covid we can lead an isolated life and they are great company .my 2 are complete opposites...millie who's nearly 12 is a demanding bossy madam and Marley who is 11 next week is a soft soppy mummy's boy.id be lost without them.
Have a good day my lovely ...going to be a windy walk this morning xxxx
this made me laugh so hard - went out with one ball and came home with 5! I will definitely look into getting a dog!! Sounds brilliant!! Hope today was kind to you! xxx
Glad it gave you a laugh..been a good winter for balls found about 18 ( previous best was 13) all washed up along the tide line .I love to know how many tennis balls are floating in the oceans lol x🤔.big hug xx🤗xx
I had my children post diagnoses and was diagnosed over 15years ago and have both SLE and Sjorgrens and other health blips!
From my prospective I spoke with my Rheumatologist about my plans on motherhood and read up about Lupus and pregnancy a lot! I also made sure the illness was stable before I went ahead with his support and that of a specialist maternity unit.
His words were nothing in life is guaranteed especially regarding health for anybody try and live your life to the fullest and don’t have regrets. Medicine is always evolving.
It came down to if I was able to conceive and if not I was also considering Fostering.
Fostering is also hard work but very rewarding. I know many people who have done it and gone on to adopt. Only you know what you are able to cope with along with support networks around you.
This is really helpful to know BeeHoneyB - what a brave decision. Given you had more than one little one I'm guessing it worked out well and I'm so glad it turned out to be the right decision for you! xxx
Dear Insomniacette, it’s hard work I won’t lie! youngest is a toddler so yeah 😂
I think what Rorah said about even when your really struggling you still do it as you know these little people rely on you. Do I run on empty yes. But I also wouldn’t be without them and have a great support network around me if I’m struggling.
Take care I wish you good luck in your choices 🤗 xx
I was diagnosed with lupus in my 20s. Had a child at 36 followed by multiple miscarriages and in my forties we fostered two children( grand nieces) for three years. After they were reunited with their family I had two massive strokes when my daughter was 11 and was diagnosed with secondary APS.
I have never taken a sick day off from mothering. I have never missed school, sport or social events. I went straight from an icu room ( in Florida) and drove for 20 hours to my home in Connecticut to see the closing night play my daughter was in and honestly with out having to parent I might have not fought so hard to speak and move again after my strokes! I miss my nieces terribly but still see them regularly and they are doing well too.
Without having the purpose of raising children I really believe my illness would have been worse not easier. Raising my own children and help raising foster children has given me something to focus on outside of myself and my illness. I have no regrets just gratitude. My health physically and mentally have been enhanced by it.
Fostering is such a special gift to give I am proud of you for even considering it!
Roarah you're amazing. I can't even imagine getting through everything you've been through and having such a positive and strong outlook! Your kids are so lucky to have you! So many excellent mums on here replying - I'm in awe! Thank you for your insight. xxx
I made the heart breaking decision not to have children for similar reasons, and it was hard. I won't lie. But its now been over two years and I know 100% it was the right decision. I don't regret it. I have an amazing husband and a dog I love to pieces, as well as a niece I borrow for cuddles regularly.
We cannot foster but if it's of interest to you then I would recommend talking to others who foster already to find out the pros and cons. It's a really tough role, especially emergency placements, but can also be hugely rewarding x
heatherevans28 I am definitely in the same space as you and as wonderful as the mum commenters are - and they are amazing - I just don't feel up to it (although now and then doubt tugs at me). It is heart breaking but like you, I'm pretty sure it's the right decision for me. I'm open on fostering though so the advice is really helpful and definitely would love a dog. Thank you Heather for replying - it's a very lonely choice this one. I made it five years ago (I'm 37 now) and at the time a lot of my friends' didn't get it, felt I was being pessimistic/denying myself. But like you I know it to be the best choice for me and knowing other women have gone through this and are strong and living their best lives makes me happy and gives me strength.
I often say that a female life well-lived in an unequal society is a revolutionary act in and of itself. So that's what I plan on doing. Thank you for inspiring strength. xxx
My heart goes out to you - I had 3 children before I became ill with lupus , I was a single parent and it was hard - I often think how on earth do women cope with lupus and small children ??? For me it’s the crippling fatigue. I think it’s a wonderful idea for you to foster, your obviously a very loving caring person xx
WOW svfarmer ! I was raised by a strong single mum so I have a good idea having watched my own mum how hard it is - all those decisions that you have to make solo, the juggling etc. You said you don't know how people cope with small children, but I'm full of admiration that you managed to parent three children singlehandedly while juggling lupus! I guess we are capable of amazing things when called upon. Thank you so much for the encouragement and kind words. xxx
Like you i made the decision post diagnosis of lupus when i was of child bearing age, not to have children because of my illness. I didn't have the energy to care for myself let alone a baby or young children.
I also considered the fact that my lupus was hereditary and could be passed on to any children i may have. My mother died at the very early age of 42 with the illness. My sister is now on dialysis and i have developed lung disease and many other issues due to lupus. My sister has children but had them pre diagnosis. They were very young when she was diagnosed and she struggled to cope even with the help of a loving husband. She has two boy.
I would have loved to have had children, however I don't regret making the decision not to have any children as i know it was the right decision for me.
Its lovely that you are thinking of fostering. I would have loved to foster children, but have never had the physical strength to be able to do so.
I wish you all the best in your endeavor, i am sure it will be greatly rewarding.
I'm so sorry for the loss of your mother and your sister's dialysis situation. You know field I can't tell you how much your response means to me. Most days I feel I've made the right decision for me then I have rare moments of small niggling doubt. But most of the time I'm certain I've made the right choice for me and it gives me so much solace to know I'm not alone, other amazing women have been through this and that they haven't regretted their decisions. They're still living their best lives! Thank you so much for replying. I know this is a tough topic to talk about because it's heavy so I'm really grateful you took the time to write back. xxx
Hi Insomnia! You are not alone. I was diagnosed with lupus at age 34 and have also decided not to have children. My husband also has a genetic mutation MEN2a so it made my decision to not have children a little easier.
I am often very jealous of those who have children and I think a lot about wanting children but know it’d be horrible to pass off awful genes to children knowingly. I don’t want to pay for in vitro because taking hormones will probably mess me up something horrible. Like you, I also would dread taking care of children because I have no energy to care for myself as it is.
I have thought about fostering children but I don’t think I’m at a place where I could provide optimal care. My husband would probably have to do a good portion of the work and that’s not fair either. I think once I get my symptoms under control and know what to expect on a daily basis will I be able to care for someone other than myself. But I feel you on this topic. I am in the same boat.
Pets aren’t comparable to children but do you have any dogs or cats? I find having a pet to be very therapeutic and you get to care for something that gives back unconditional love.
Hey Jmiller623 ! I'm so sorry the symptoms are not under control for you - I hope they get under control soon though! I really have thought of getting a dog - it's on my to-do list once I get out of lockdown. I am so glad I'm not the only one who now and then feels a twang of jealousy - it's largely when one of my friends' kids hug them or flops all over them with affection - when they're tantruming the jealousy vanishes! As I said to field and heatherevans28 it really is so extremely helpful to know I'm not alone and there are others who have made this difficult decision and have not regretted it, are thriving and living their best lives. Thank you ladies - honestly it's a tonic to know this. xxxx
We are going though very similar conversations in our family now- but into my daughter snd her fiancé.
As for me, we had our two children with great difficulty and many miscarriages only to later learn I was suffering from APS, which did greatly worsen over time.
As for our daughter, she will be 30 on her next birthday. She has been diagnosed with diffuse connective tissue disease - marked as early lupus, primary auto immune deficiency of IgA,
And LADA ( diabetes “1.5”).
She also has signs of early scleroderma.
She also has prothrombotic tendencies and come superficial clotting.
She is a post doc researcher at a well known university, and has very good insurance.
She and her husband plan to pay for a surrogate ( which is partially covered by insurance?!) and avoid the “ hit” of the pregnancy flipping the switch to activation of APS. ( my case is crazy severe and my mother dies when I was 26 of severe APS clotting complications. )
She has started to rethink children altogether she has become sicker in these past few months.
If she becomes totally insulin dependent she might not be able to.
Hi KellyInTexas , I'm so sorry for the miscarriages - what an awful time that must have been for you and also the loss of your mum at such a young age. That said I'm glad at the end of the struggles you had your wonderful daughter. One of my regrets is my own mum won't get to be a grandma and she really was born to be a grandmother. I'm an only child so my decision not to have kids will also deprive her. I can well understand where your daughter is at. I think this is such a personal decision, there's no right or wrong about it - as we can see from the responses. The mums who have replied have done amazing things - they have bravely made it work. But also for those who make the equally brave decision not to go down the road of becoming mothers it's still possible to live a happy and fulfilling and meaningful life without any regrets. I fully plan, having been inspired by others who have made the same decision, to live my best life without children. As I set about replying to people tonight I felt more and more certain in my decision not to be a mum. I love kids, but it's not something I feel capable of and that is ok. All my love to you and your daughter - I hope both of your health improve! xxx
It’s been a tough racket in my opinion- and I definitely passed on some really crap genes. ( and some really good ones too.)
There are children already born who could really benefit from having you in their lives. It is really important and powerful work. See where it takes you.
Hey strawberrylips thank you for writing - what strength it must have taken to cope with all you've outlined. It helps so much to hear there are others in this boat who despite the sadness and challenges have made excellent lives for themselves and been able to parent in other ways such as with your nieces and nephews. You're an inspiration. xxx
I wanted to reach out and say hi and thank you for raising this difficult topic. I've had to make the same decision and on days when I feel awful I know it's right but on days when I feel well I really struggle with it. I feel that I am letting my husband down although he never makes me feel like that. I have found great joy in being a dog mum to two wonderful labradors.
I think it's wonderful that you are thinking of fostering. Please let us know how you get on 🐕
Lions-lake you literally have described what I do with this sentence "on days when I feel awful I know it's right but on days when I feel well I really struggle with it. I feel that I am letting my husband down although he never makes me feel like that". Thank you for engaging on this topic - as I said to strawberrylips it's not half as frightening knowing there are other sisters in arms out there who have battled this situation and are thriving. Being a dog mum is definitely an ambition! If I do foster it probably won't be for another two years. But when I do I will post on here for sure. Sending you love. xxx
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