Do you worry about having kids?: So this is a bit... - LUPUS UK


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Do you worry about having kids?


So this is a bit of a personal one, but it's something that is a big concern of mine- kids.

There are two main reasons I'm worried about having kids: Genetics and being too ill to parent.

I don't know if the latter is something that will calm down a little as I work out more about what is actually wrong with me and get used to it, but right now I am just terrified about the future. Will I ever be able to reach the point where I can contribute enough to make kids a financial possibility? Will I ever be well enough to support kids? How old will I be by the time kids are and option and will it be too late? Will my kids have to suffer with my issues? So many fears.

And genetics is something I worry about too. I want to be a parent and always have and obviously as a parent I would want my kid(s) to be happy and healthy. In my life already though I've battled with depression, OCD, Learning difficulties and a whole host of physical issues I don't think I'm even fully aware of yet. And it seems that this has at least something to do with my genetics.

Does anybody else worry about their future with their illness and kids?

11 Replies

Can't comment about that - but I will suggest you read a blog called Despite Lupus by Sara Gorman. She was diagnosed with lupus 6 weeks after getting married at the age of 26. She has had two daughters and is not only a parent but writes about lupus and runs a business. You perhaps don't go about it in quite the same way - but it can be done.


I didn't know I had lupus when I had my children, but I knew there was something wrong, (liver and kidneys during pregnancy) and I also had primary lymphoedema (I found out early stages of first pregnancy that it was hereditary I don't know why it hadn't dawned on me previous to that) so faced that question and worry then.

But I thought to myself, would I prefer to be here myself, with the problems, of not here at all, if my mum had known before I was born that I would be sick. Which made it easy to carry on. Not everyone has to be perfect, so if lupus is passed on (neither of my kids show any signs of lupus or lymphoedema btw they are girl and boy 19 and 16)

As for your ability to look after a child, all I can say, is you'll manage. My kids know that plans are subject to change and sometimes we've had to miss out, and they are great about it, cos it's normal for them. And we always do the plans eventually when I'm well enough. I put them first in everything, and they know that....and that's what counts.

As for mental health, that can be tough, and mine got much worse straight after having babies, so you just have to get the help and wait for it to pass, and don't beat yourself up in the process.

So overall, try to push your fears aside a little. You don't have to be the worlds greatest parent on paper, to be the best parent in the world in your child's eyes x


I also didn't know that there was anything wrong when I had my two daughters, now 25 and 28

I always was plagued by migraines, but while I was pregnant I didn't have any.

I had one missed miscarriage, (my first pregnancy) at 16 weeks which was very distressing.

I was diabetic during both my full term pregnancies, this resolved after I gave birth both times.

So far my daughters are both healthy, they don't have any children yet.

Interestingly, I was reading some research recently that children of mothers with SLE are more likely to have children with learning disabilities, both my daughters have formally diagnosed dyslexia, they are both quite high functioning and have found good coping strategies, but I had never considered that there may be a link, and it's possibly just a coincidence.

Would I have had children had I known that I would end up with this stupid disease?

Yes I think I would have just tried to be as healthy as possible.

Would I have worked as a nurse for 30 years and worn out my knees , spine, feet and shoulder joints if I'd known I would also developed SLE?

Not a chance?

I really am wondering why I haven't looked after my body a little more.

You just have to make sensible decisions and get on with life.

I do worry that they will develop SLE, they are both aware that they must keep reminding their doctors that I have sle, my consultant says that the risk is very low.

Good luck, what ever you decide I hope that it goes well for you. 💐

Hello BubbleMonkey,

I read your post and felt that I should reply. I'm afraid that I can't really offer any proper advice on the subject of fears re having children. I was 39 when diagnosed and I had already had my 3 children by then. Extremely lucky. I had suffered allergies and migraine and asthma and eczema etc most of my life but I think now with hindsight my lupus was triggered by my third pregnancy and went undetected for another 5 years. I am also lucky that my form lupus has never attacked my kidneys, liver, lungs etc.

I do not know how old you are, how long you've had lupus, what your lupus symptoms are or what lupus medication you are on, but I do know that people with lupus do have babies. I found a couple of articles for you. They might help. Obviously you will need to discuss all of these issues with your partner, family and medical team, in due course. But do not give up hope. None of us with lupus knows what is around the corner but you will find your way, where ever you end up.

My youngest was 5 when I was diagnosed and fatigue has been a major symptom for me. But with the help of my husband we have got through. I make the most of my good days and when I am not so good, my children understand. My husband will take them out or occupy them, whilst I rest or we will all have a day at home chilling. I do feel guilty sometimes that I am not more active and cannot do more cycling, walking etc with them but they love me and understand.

Here are those links.

I hope you'll stay in touch with us on this site. It is very helpful and informative. I also joined Lupus UK as they send out new letters etc and are very supportive too.

Best wishes.


BubbleMonkey in reply to Wendy39

Thank you so much for your supportive response. I'm 21 now so I still have some time before kids are an active desire, but it's still something I think about.

I don't actually have lupus (diagnosed anyway), but there's something going on and I already know I have AI hypothyroidism. I'm currently looking into getting more answers and hopefully seeing a rheumatologist (omg I spelled that right?!).

So yeah hopefully in the coming years i'll get more answers and more used to things and i'll be able to go into all of this a little bi prepared.

Thanks again for your reply. I will definitely be checking out those links. :)

Thank you all for sharing. It's nice to know that there are people in that situation who are coping and have no (or minimal) regrets about it. I guess not every decision turns out perfect so there's not too much point in freaking out over little possibilities.

Hey my parents had no idea there were any health issues in the family and now there's me so life can kick you in the ass no matter what.

I think this is probably something that's affecting me more right now since I'm in the early stages of not knowing what's going on and having loads of difficulties without management. I dropped out of uni cos of my health and I'm still not working or doing anything else yet, but I guess as that changes (I'm sure it will eventually) and I get more used to things I'll become more comfortable with the idea of kids.

If my bf can cope with me with my mental and physical issues then we can find a way for kids to.

I doubt this is something i''m going to be fully comfortable with ever, but I'm seeing it more positively now. Just cos I'm worried about stuff doesn't mean it's going to happen :)

Wendy39 in reply to BubbleMonkey

You are very young and it is so much to take on board. Giving up uni must have been very tough too. Be patient with yourself. Take some time to readjust. You will get there. Stay positive. x

Paul_HowardAdministrator in reply to BubbleMonkey

Hi BubbleMonkey,

I'm sure that as you find answers for the causes of your symptoms, get a suitable treatment/management plan and get your condition under control you will have a much better idea of what you are capable of and you will hopefully have more confidence in managing too.

Regarding your question about genetics and the risk of having a child with similar problems to yourself; If you have an autoimmune condition (like lupus) then it does slightly increase the risk that your child could also develop one. This risk tends to be slightly more pronounced in girls because these conditions are generally more common in females. The risk of a child developing lupus if their mother has it tends to be very low. Most studies show this risk somewhere between 1-in-20 and 1-in-70. This is due to the fact that there are so many genes involved in lupus and an environmental trigger is also required.

If you need any more information about lupus, we have a free pack which you can request or download from our website at

Thank you for your response, especially the part about genetics. That makes me feel a lot better and less worried about potential risks to their health. :)

Hello dear

I was 26 when i had my son, but before i conceived, i went to my gp to complain about my joint pains, chest pain and swollen fingers. I had my test i was pressurized by my mum to find out my test result b4 i travel on a holiday. I called to see if my results where ok and i was told it was ok. On my way to the airport i was called by the gp and asked to come amd see him but unfortunately i couldn't. I was referred to a rheumatologist but i got pregnant by the time i got back on holiday. My relationship broke down because i wasnt going to abort the baby . When i got back my gp said i will be referred back to rheumatologist after i have had my baby.

2months after his birth, i went for the rheumatologist appointment and she told me i had lupus. She put me on hydroxychloroquin and few weeks later i was in hospital bcos my kidneys were now affected. I had my first chemotherapy and i remember the dr telling me about the possible side effects (possibility of affecting my fertility). It got me thinking what i would have felt like if i aborted him and because of my health wouldn't be able to have another child.

I am very lucky to have my mum with me. She is the one that takes care of him because am always too exhausted. I still want more kids and i do worry if i could be able to have more ( although am not keen on the technicalities of getting pregnant). I also do worry if i have passed my lupus to my son.

But am 31 now and i have learnt not to worry about tomorrow but to take each day as it comes. Worrying will only make you unwell. Your still young so live ur life. If ur a person of faith put ur worries in God's hands and let him do his will. There are certain things in life that are out of our control and it can only make matters worse when we worry. If you have a child, God will give u strenght, give you help and provide the means to support you and ur child. So let 2mro worry about itself and when the time is right you will see things falling into place.

Relax and everything will be fine. Take care and God bless.



Dear Bubblemonkey, Choosing to have a child is always a personal experience, but I can only tell what I have experienced.

I am now 54 and am very lucky to have four adult children and two grand children.

When I was young I didn't know that I had a health condition. I did have miscarriages and a list of smaller health problems. It was when I was 40 that I was diagnosed. By then I had my children, but had been struggling for years. I do worry about being a burden. I am concerned that genetically I have passed health problems to my children. My eldest daughter has anaphylaxis, asthma and eczema, my next son has Graves disease and my youngest and grandson have Aspergers. They do not blame me and would not change anything. Just as I do not blame any of my ancesters. Equally I worked as a school nurse for 16 years. I helped ill and disabled children access school. These children were some of the happiest children I met. Also happy children aren't always the ones with the most financially, just the most love.

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