So there's something I struggle with having been diagnosed young and that's letting people love me.
Now I have my friends and family and that's great. But I sort of swore off dating or having a relationship ever since I was diagnosed. I've become a lupus/sjogrens nun of sorts. I think the big barrier for me is that it feels selfish or cruel to let someone fall in love with me when I know I'm likely to get sicker. It feels like I'm chaining them to the same miserable fate I'm dreading and working so hard to avoid. Or that I'm entrapping someone who will quite possibly end up being my carer. Please don't take this as a judgment to those of you that have partners - I absolutely don't think that of anyone else - it's just in my specific circumstances, with all the knowledge that I have and given I already have sky high markers for muscle wastage - I have all the bad blood results for both sjogrens and lupus that suggest I will do worse as time progresses. I literally worry about what sort of physical state I'll be in when I hit my 50s and I'm scared that I will tie someone to the same fate. So I'm really scared of letting someone love me for that reason. I've had chats with my friends about it and they say well it's that person's choice if they want to date and love you etc but the reality is a prospective partner can't know what this will end up like and I look deceptively well on the outside right now - but I don't feel well on the inside and there are already days when I struggle.
It's not that I don't think I'm worthy of love, I know I am. It's just I have a lot of love around me from my friends and family. Is that enough to sustain me? Is it best or kinder to avoid letting someone get close enough to love me as a partner and spare another human being pain and difficulty?
I made a very similar decision about having children, but denying myself children AND a partner can feel very lonely at times even if it's just me trying to spare others from having to be on the same journey with me.
All thoughts welcome - I'm working through this and I'm really sorry if I offend anyone - honestly not judging people who have partners and children - I'm in awe of that. I just don't know if I can do it or if I should do it. I have a weird guilt complex about it and am wondering if anyone else out there has had similar thoughts or struggles and how they dealt with it or moved beyond it? xxx
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Insomniacette
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My wife has RA, fibro and suspected lupus. This was the case when we started dating 5.5 years ago and she was upfront about it. I did some research into her illnesses so didn't go in blind but our connection was so strong that I wanted to spend my life with her. We've now been married 2.5 years and while things have occasionally been tough health wise I wouldn't miss a second of it. My life is so much richer with her in it!I don't believe you can make that decision for your future partner. It should be their choice. You say you are lonely sometimes so your heart clearly knows it wants to be with someone. I would strongly suggest you don't close yourself off to that possibility. Your illness is already taking away your health, no need to let it take away your love life!
Thank you so much murtoz for replying that is really wonderful and uplifting to read. There's not a lot online about people who successfully found partners and made it work post diagnosis (a lot of people are coupled up already when diagnosed) so your story really gives me hope. Sending you and your wife lots of love 💕 xxx
What a beautiful reply and it bought me to tears . How lovely you say that your life is so much richer . You are clearly very lucky to have each other ❤️
I have Lupus, Sjogrens, coeliac, and was diagnosed with SLE when I was 20. My boyfriend at the time lasted precisely 4 days after diagnosis and then I was unceremoniously dumped. I was devastated - not only was I terrified about the diagnosis but also the thought that no-one would ever want to be with me and the horrible burden that I would become.Fast forward a couple of years, near death experiences and numerous hospital stays and I was thoroughly single, trying to navigate university and still couldn't imagine a being able to share a future with anyone, let alone have children. It felt selfish to do that.
Then I met someone. He already knew I was ill with something (I'd been away from uni for a couple of months while I was in hospital) so I could be upfront with him about it from the start, gave him an 'out' that I would understand completely as this wasn't going to go away. He hung around. When we got as far as him asking me to marry him I put the brakes on and asked him if he really wanted this for the rest of his life. By this point he was helping me get dressed, I couldn't work, couldn't do much at all really. His response was that he loved me. Whether I was ill or not. And it was HIS choice, not mine as to whether it was worth it or not for him. He was emphatic about it.
So we planned our wedding from my hospital bed.
It worked out - we have just had our 24th anniversary, we have two sons who, through knowing someone who is not always on form, are lovely, empathetic young men. I managed when they were small (can't say it was easy in the slightest) and luckily, as time has gone by my disease is far less dramatic than it used to be. I am still in pain, I'm still limited as to what I can do and my heart still occasionally breaks that I couldn't be the go-getting mum who charged about on playing fields with my sons BUT because I couldn't work I was always there to see them off to school, always there when they came home.
And having children means that you feel guilty all the time anyway, because we're all just flying by the seat of our pants, hoping that we're doing the right thing!
Just because we aren't 100% (sometimes not even 25%, we all know that!) doesn't mean that we should not have love, a family and a fulfilling life. And I know that if the situation was reversed, I'd rather be with my husband, tough times or not.
So if you find someone who is the special one for you, don't dismiss him because you are afraid and don't not have children because you're feeling future guilt. Of course there have been times that it's been awful and really hard but the good times really have outweighed the bad. For me, anyway. And I'm fully aware that I'm very lucky.
I'd also like to add that having a partner and children is not the be all and end all - what's wrong with living your life with friends and family, if that's what you want?
So good luck to you, and I hope you find the path that suits you best.
As an inappropriate friend once said to me even ugly people in wheelchairs find love. I empathise with what you are saying, I felt the same for many years, that it would not be fair, I could be a burden etc. There was also an element of keeping the control, I had enough energy to manage me and didn’t want to then manage someone else if I was ill. It protected me, if I got really ill and then they left how would I feel so better to not risk it.
However, following a death in my family I realised being alone kinda sucked. I decided to get out there.
I now have a boyfriend who is amazing! He had his ‘baggage’, two beautiful daughters which meant life would have to accommodate them. I explained after 3 dates that I had Lupus and what it meant. I advised him to look it up which I don’t believe he ever did. His view was he loved me and wanted to be with me no matter what. Foool!
We have now been together 4 years, my life is so much better, he knows my triggers and symptoms and helps me manage them. When I am fatigued he does the heavy lifting - cleaning, cooking, sometimes even the talkings if I can’t. He is also good at holding me accountable when I am overdoing it.
His view was that it was his choice to be with me and if that meant my pal Lupus too then so be it.
We can’t make decisions for others, people are responsible for their own choices.
Lupus takes enough away from our lives, don’t let it take the joy of companionship, partnership and love as well.
Hamptons this made me giggle (Foool!😂) Again massively helpful to know I'm not alone in thinking like this!! So glad you found someone who makes you happy!!xxx
Hi insomniacette I think you are being far too hard on your self - everybody deserves to be loved by that special person , whatever their health circumstances , you would make someone very happy , it would be their choice to date you or not - I myself was diagnosed with Lupus very early on in my relationship with my now fiancé , I had to give up work , my life changed in a big way but fast forward 5 years and we are getting married next July and I can honestly say my fiancé absolutely adores me and together we make each other very happy xx
SV! You're so lovely responding to this while you're in recovery! Btw v v v pleased to read that although it was the big c it has been contained and is under control for you! Sending you so much love as you recover and manage the menopause. I hope you're being so kind to yourself and thank you for your kind and generous story. All these responses have really helped me with my thinking on this. xxx
I read all the replies before making mine.I have two comments both opposite ends of the dilemma but your words made me cry and I’m compelled to answer.
1. A single day of love from your chosen one will sustain your heart forever.
2. If you chose to be alone it is not wrong and it is possible to be happy on your own.
I lost a partner of many years to mental health, I achieved happiness on my own after a mammoth struggle but I did it and I’m proud of it. Life now holds no fear for me except spiders as I know I will prevail no matter what.
I’m now married for a second time to a wonderful man (who likes spiders) and I’m lucky to have three lots of happiness ~ one was when I was alone.
Love is so strong it does conquer all, if you find it, take it and enjoy it and if you don’t ~ ditto.
Awww thanks Stillsdisease - I know what you mean about spiders!! I'm so glad you found a love in your life. It's also really uplifting to read about your three lots of happiness including one time when alone! I really appreciate the words of wisdom. sending you love xxx
Before getting married, we found out that my husband had a genetic mutation. He asked if I still wanted to marry him because we’d have to do IVF and all that jazz. I said absolutely because I love him. We got married and then I get lupus and can’t work. Basically lost a 6 figure salary to $0 in the process…. from yachts to POTS in a mere few months.
I felt sooooo guilty that he married a dud. We also will not be having children because of my lupus and his mutation. I don’t know if I’ll ever be able to shake this feeling off so I completely understand how you feel and I am married. Best thing I did was find a good LCSW/counselor. I just talk through my feelings and obvious self esteem issues. My husband loves me just the same. He is so supportive, which is hard for me to accept since I came from a tough love, suck it up type family.
All I can say is learn to love yourself first so others can do the same. Despite our maladies, we all have something to offer this world. It takes some of us a little longer than others.
Jmiller623 I very much relate to the sharp life turn and dramatic change in economics. I send you a very supportive hug over that as I've found that an extremely hard adjustment myself and relate a lot. I would like to say that you do so much good on this forum and make such a difference with your kind insights, suggestions and knowledge. So it is of no surprise to me your husband adores you. I shall definitely be working on this issue with myself as it is a point of hesitation for sure. But I've felt so reassured by all the responses and realising it's not just me that has had this thought and that others have bitten the bullet and are happy. xxx💕
Ha! Thanks stillsdisease! Definitely happy - so many lovely stories. I don't know if I was really sad, more just confused! It's very hard to know what to do for the best I find. Particularly when you want the best for those around you - but I've definitely got a more open mind as to what might be possible for me and that's thanks to lovely people like you giving me food for thought! xxx
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I'm so glad you found a love in your life. It's also really uplifting to read about your three lots of happiness including one time when alone! I really appreciate the words of wisdom. sending you love xxx
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