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Date Joined Jul 2016
Total Posts : 2
Posted 7/21/2016 11:27 PM (GMT -6)
As a little back story, I'm 24 years old, about
18 months ago I started to have my first lupus symptoms.
I went through one heck of a diagnostic battle, which I think anyone who has Lupus can relate to.
I was very sick, I had to give up working, my independence, social life etc.
I became very depressed, I felt my life was crumbling around me.
It took me a very long time, I've sacrificed and compromised but I'm now in a place where I am at peace with having lupus.
My day-to-day life is still harder than it is for most people, there are things I can't do and things I have to worry about
that other people don't, and I do feel ripped off in life, but I try and be the best version of myself that I can be.
When I was diagnosed with Lupus, a lot of doctors warned me about
the risks associated with Lupus and pregnancy; every Lupus pregnancy is considered high risk. I have a very rich family history of Lupus and auto-immune diseases, so I made a conscious decision not to bare children naturally. I didn't want my child to inherit Lupus or for to have a high risk pregnancy or for my child to have complications, I knew I wouldn't be able to live with myself if I saw them go through what I went/am going through.
That isn't to bash mothers with Lupus, it's every woman's decision if they want to bare children or not and all respect to you, you know your self the best and I completely respect a woman making those judgement calls, but I decided not to.
Because of this, I always thought I would adopt. I've always wanted to, even before being diagnosed with Lupus, but having Lupus really pushed me to decide to adopt; or at least try to.
I researched current Australian and international adoption laws and agencies etc. and no country and adoption agency will allow someone with a chronic illness, including Lupus or any other strand of auto-immune disease to adopt; I am considered 'unfit' and a liability.
Since finding this out I have been devastated, my one shot at ever having a family has been taken from me, because of a disease I have which is no fault of my own.
I've gone to sexual health clinics, spoken to doctors, nurses, my rheumatologist and even spoke to someone about
the possibility of surrogacy (which I'm also not allowed as technically I am able to bare children and my reproductive organs still work, even if the pregnancy is high risk, surrogacy is reserved for women with reproductive issues) and all responses have told me that being a mother probably won't ever happen for me.
I feel so shattered, I've never felt sadness like this before.
I feel like I could do great things in my life, have an amazing career, be of good character etc. but under the eyes of adoptions laws that means nothing, I am defined by my disease.
I've worked really hard to triumph and get where I am now, I had Lupus attacks and flares every day, it caused inflammation around my heart, and I worked so hard to try and maintain my life and not let my sickness define me as a person or stop me from having a fulfilling life.
I feel like I will never be able to experience being a mother, something so special, unique and magical to a woman. I feel like I won't ever be able to have a family of my own, like Lupus has dictated how I spend my life.
I've already given up so much and compromised and accepted so many things because of Lupus, there are so many things I can't do in life because of Lupus which I have had to sacrifice and accept. I don't want to have to accept not ever having a family, I want to make that decision for myself, not Lupus.
I'm tired of giving up on parts of my life, I'm 24 years old, this should be the best years of my life.
I'm trying to remain as positive as I can and trust I can get through this, but being told I won't ever have a family is a hard pill to swallow and I feel like there's going to be a huge hole in my life.
I'm at this age now where all of my friends are becoming pregnant and having babies etc. and I will have to watch them reach these milestones in their life and have this happiness which I can never have, and be known as the poor girl with Lupus who can never have a family.
I also don't know how I will ever explain this to a future partner, how can I explain to this a future partner, I can't bare children, I can't adopt and I can't try surrogacy or other alternative methods, they'll have to live with that also.
I'm very lost, I'm very sad, I don't know what to do, I don't know how I will ever be able to accept this type of existence.
I try hard to excel despite having Lupus, I love travelling so I make sure I do that, I love my career so I work hard to be good at it and not let Lupus hold me back, and I'm proud of everything I have overcome and done.
But this scenario seems hopeless, I don't know how to overcome this or how to make this better.
I know no one can offer me answers, only condolences, I just don't know what else to feel other than just pure sadness.
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Date Joined Mar 2009
Total Posts : 19782
Posted 7/22/2016 2:39 AM (GMT -6)
from a man's view, who can not produce, hormonal birth defect, I totally understand. I will say this, your young, and life is still beginning, yes because of the lupus red tape you have been hit with the political wall...and because of the dx, this is rough-but where there is a will there is a way. keep your heart
open and the universe shall provide. I have never posted here, but I had a partner who had lupus and because of polycystic ovaries could not conceive. keep strong, just a turtle passin' by.
THE HAPPY TURTLE.
A QUOTE FROM THE HAPPY TURTLE THAT REFLECTS ME.
"COMPLEXITY IS MY WAY OF EXPRESSING MY NEEDS IN A MANNER THAT IS NEITHER DESTRUCTIVE, NOR NEGATIVE"
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Date Joined Jul 2009
Total Posts : 14475
Posted 7/22/2016 11:10 AM (GMT -6)
Is it possible doing a private adoption?
Maybe find someone who doesn't want a child who can do this?
I'm not familiar with the laws in your country. I live in the USA.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors
When life throws you lemons....
Pick them up and throw them right back at them! :))
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Date Joined May 2005
Total Posts : 7473
Posted 7/22/2016 12:45 PM (GMT -6)
Yes, they do say a Lupus pregnancy is high-risk. However, it's also true pregnancy eases Lupus symptoms in some mothers.
I would not make a final decision now - but when your life is ready for a child, see how your symptoms are at that point, consult with your rheumy and a high-risk ob-gyn then. Things may change between now & then - the one certainty in life is that things WILL change - and perhaps it will be in the cards after all.
The same with adoption -- I don't know about
"laws" and such, but it seems to me that adoption would be based on SYMPTOMS, not on a diagnosis. I say that because although I have a Lupus dx, and was very sick, I am now symptom-free. It would be wrong to say I couldn't care for a child because of how I felt 10 years ago.
Stay in the moment, keep your head where your feet are -- don't worry so much about
the future, just keep laying the groundwork and enjoy today to it's fullest.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde
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Date Joined Jul 2016
Total Posts : 2
Posted 7/22/2016 8:36 PM (GMT -6)
Thanks for the replies, it's nice to just hear from people who I can relate to on some level, or at least know what Lupus is like.
I'm not worried about
my own symptoms and pregnancy being a way to reduce my symptoms, although pregnancy can also make symptoms much worse, I'm worried for the wellbeing of the child I would bring into the world, they're liable to get lupus themselves, nearly all babies are born prematurely, one in three babies have a birth defect, one in five have high blood pressure and blood clots and only 50% actually survive.
Evidently because of the nature of Lupus and auto-immune diseases, because they're so sporadic and go in and out of remission randomly, I'm considered a liability and unfit and won't be considered. I thought the same, surely if I had my symptoms very well under control or was symptom free for a long period of time, 10+ years even, that they couldn't possibly consider me of ill-health and unfit. But of course, being symptom free for 10 years doesn't mean I couldn't become sick tomorrow, it's just how Lupus is; there's no garantee.
It feels like I'm being defined by this illness, because of a piece of paper that says 'Lupus' on it, nothing else really matters. Like, these doctors and nurses and adoption agencies have this piece of paper that says 'Lupus' and because of that they automatically think they know me and can make these judgment calls on my behalf. Any of the great aspects of myself and life aren't considered, and I find that difficult to come to terms with and like I have no control.
I know I'm young and I have time, but I'm already finding that my friends are forming their own families, two of my best friends have babies, and I'm becoming less of a priority, which I understand, friendships tend to take a back seat to that, and I just worry where I'll be and who I'll have; like I'm stagnant and stuck and gradually watching everyone I know achieve these great things and move on to new chapters in their lives, and I can't and won't.
I'm finding it very hard to accept this or to summon the strength to remain positive, I've exhausted all of my options so it seems, I don't really know how I can remain hopeful and I just feel so sorry for myself and sad that Lupus has taken this from me and I can't do anything about
it. I hate that it's dictating something so instrumental and important like me having my own family.
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