Hello everyone! As I am new to this website, let me just give a brief introduction to myself. I was just recently diagnosed, on Oct 21, with SLE, although I have been experiencing flare ups for a whole year (during my last year of university, no less!). As of now, my specialist has put me on a daily dose of 4 tablets of prednisone (5 mg), two tablets of hydroxychloroquine sulf (200 mg), and 5 vitamin D pills (11 pills in one day!). I am a 23 year old recently graduated university student, that is living in Canada. Nice to meet you ~
I am at the stage in my life now where I would like to start looking around for my future companion, but now I have got a medical condition that a potential partner should be informed about...
As I am still in the process of adjusting to my new situation and learning how my lupus affects my body; I am quite unsure and scared to tell others about my recent diagnosis.
How do I tell others what I do not quite fully understand? I can't even tell when I am overworking or pushing my body to hard when the pills start working their magic. I am just honestly scared to drive away potential partners because I have overwhelmed, burdened or stressed them out with my condition... Although I do tell myself that if they cannot handle helping me through this tough time, then they weren't the person I wanted in my life. That being said, I don't want to keep closing any doors and put up safety walls around me because I am scared of being rejected or abandoned in my time of need...
Please give me some advice!
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baekhyunkitti
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Hi I was diagnosed with lupus in 2011 and had symptoms for previous 5 years, I started on same steroid and gradually came off it, I am now on Hydroxy and the vitamin D tablet. I know you feel anxious but it does get better and it is possible to live a fairly normal and active life. Of course there can be some tough times but it will improve. I run 3 times a week and although have the odd flare up it is controlled.
I am sure you will meet someone and although you will tell them in doesn't have to be a big issue, try not to worry just be yourself and I am you can meet someone. If you need to talk you can always send a message and the people on this site are all really supportive.
Wow thank you! That really encourages me ♡ I like that you divide your exercises into shorter sessions and will give spreading my activites out more throughout the week to prevent flare ups.
I also feel more confident finding someone for me. I really appreciate your kind words ^^
If you meet the right person it won’t matter. Someone else just asked this same question! I told her wait until the 5th date. If they want to go out with you that many times, it won’t bother them. Just make sure you find someone that will rub your hands! Good luck!
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I would also add that the right person will make your mess their mess. I’m still hoping for the same thing-for someone to make my mess theirs-and I’ve been married for 19 years. It’s a tough condition to explain to others because of its effects. I’ll say a sura for you.
That is some really good advice! I shouldn't be worried about how to tell someone until we first establish a good amount of trust and connection with one another. And our condition is very difficult to explain. When the pills take effect on me, I feel amazing - practically normal - and like I am super woman! the next morning however, my whole body hurts and aches so bad (because I tend to go a lot of crazy with my activities). Concerned family and friends would always ask me, if I am feeling okay, and to tell them if I am not but the truth is.. I don't even know that answer now that I am on the medication. It is not until the next morning do I realize that I was indeed pushing myself.
And I am not sure if I am just reading it wrong, but are you saying that even after being married for 19 years you are still looking for someone to share your burdens and problems with?
I’m just saying that my wife doesn’t even understand what I am going through. I was only diagnosed in May 2016 . She is still getting used to the idea. Sometimes she seems to be annoyed that I am in pain or sick to my stomach. My hands hurt all the time sometimes worse than others and yet I am the one who seems to be the one that rubs the others hands. Sometimes I literally have to shove my hands under her legs or her butt just to get some pressure on them and warm them. Probably looks funny when I do it during church. Ha! No one in my life understands lupus. It’s hard to talk about that with her because I don’t want her to feel bad. As a man, it’s harder for me to ask for help. That’s my own fault
I can relate in a sense with my relationship with my mom. I can't really talk to her about my struggles or pain because she feels really guilty as if she caused my lupus (which she obviously didn't). But i think we should really give more credit to the loved ones in our lives. It definitely isn't easy for them to always sympathize with a condition that has mostly internal and invisible symptoms. Even i am often preplexed and confused by how fast my mood changes or how suddenly severe exhaustion hits me. It is a learning experience for everyone invovled and it is perfectly fine to make some slip ups in the process.
I think we are similar in a way. I am also confronting and helping out my mom when she is struggling because i am always used to being her backbone and rock. I can see how my diagnosis has broken her down as she feels like she lost her lifes companion; she shares all her troubles with me as my father passed away four years ago (shes been married to him since she was 18). And to be honest, i don't think you and I can just suddenly become more selfish to our loved ones... it is part of our nature to put other first before our own needs. But you don't have to give up your role as the moral support completely. It is just about compromise i think. Still be there for her when she needs you but also allow yourself to lean on her for support. I find it helps to give them metaphors of how badly you feel in order for them to really understand your state. If i can't go out to places with my mom, i compromise by doing some light house cleaning or making us dinner instead since there are other ways you can help out that are less draining for you.
Use the benefits of being married to each other for 19 years to your advantage. You both must have been through a lot together, and had seen many different sides of one another. I am sure your wife will be more than happy to give you a hand and she wouldn't think any less of you.
(Sorry if i am rambling here... my train of thought isn't what it used to be).
You are absolutely right. Her life changed when mine did. Here’s what I can’t get past. For two months before my diagnosis I worked (I am a teacher ) all day. I couldn’t bend my knees and my feet were on fire. My hands were misshapen and swollen so that they couldn’t close. I came home and did laundry and made dinner every night which involves two full flights of stairs in my house. Then I literally dragged myself up the stairs because my feet hurt so bad by the end of the night and I collapsed in bed. This went on for two months until I finally got in to the rheumatologist. Not one foot rub in those months! And my feet don’t smell, baekhyunkitti. Make sure you find a man that will rub your hands and feet !
Wow, I am so sorry to hear that. But i learned it the hard way that I don't have the luxury of getting what I want as a pleasant or considerate gift. If i really want or meed something, i will have to ask for it. It may be very difficult to do and obviously it will feel so much special to get help without saying anything... but you gotta pick amd choose your battles.
Have u tried to take her to ur doctors appointment? I am not in a relationship but when i was diagnosed my doctor made it his duty to call my mum and my uncle to have a chat about the condition and the amount of help and support i need. It did work as a single mum, i have my family helping me and it makes things abit easier. Take care and God bless.
Try taking her to another appointment... i think we can agree that it was a scary moment for everyone when we first got our official diagnosis back. There are also support groups for famiy members of people whom have lupus. It can be quite easy to forget that they are also going through a whole whirlwind of emotions and concerns as you are.
Take her to another of ur appointments and you can talk to ur doctor about the difficulty ur facing and ask him if he explain your condition to ur wife. It will take awhile but gradually she will understand and make adjustments for you. Take care and God bless.
Oh babe I really feel for you. Wish I could have concrete advice but I was diagnosed at 18 and it was impossible to explain to anyone what was happening to me. But the people who care about you will want to be near you, will worry about you, will make you endless cups of tea and try to make you smile. Those are the ones to look out for. Don’t be looking for a partner just yet would be my advice. First learn how to navigate your body, your symptoms, learn the patterns and how you respond. Lupus is a rollercoaster with tentacles in our bodies and mind. When you have a good enough grip on it, then make some trusted friends and then (third priority) entertain romances 😂💜
oh wow, you must have had a difficult time also at that young age. I equally feel for you ~
I have learned that lupus has changed me for the better also, I never used to express any negative emotions or feelings I have had growing up, and always kept it in and I certainly never asked for help when I needed it. I just always wanted to please my loved one and gave them the answer and response I know that they needed. But for the first time, I am now forced to be more honest with my feelings and to prioritise also my own well-being. Family and friends are also more considerate when they ask me to do things or go to places which makes it a lot more easier to be upfront about how I am feeling, since the onus isn't just on me anymore. I have now learned that it is perfectly okay and fine, for my mom to make me tea and breakfast in the mornings that I don't feel well and vice versa when i feel great.
In terms of a partner, I am by no means thinking of settling down into marriage anytime soon! Maybe in like 2 or 3 years from now, I will start considering a committed relationship. I am always upfront about my plans to take it slowly and that I am not looking for marriage until a couple of years to any potential partner. It is just that I really figured out, that being social, having fun, and talking to people really helps me feel better and de-stress from everything. I never really had much of a love life growing up and now it is really getting to me. It actually makes me depressed and longing for at least some companion to make me their priority and to be there for emotional support. I am the youngest out of 5 kids and all my siblings are either settled down or in the process of almost settling down so I just want to finally have my own experiences. Although I know to take it easy- with any relationship really - as I am still figuring myself out, to always concentrate on what my body and emotions are telling me first and foremost. And as alwaysm honesty and communication is the key ~
Welcome to the LUPUS UK community forum. This is an excellent topic and I hope that you get lots of helpful advice and support from other members.
We published an article on our blog about lupus and relationships which does discuss this topic and includes some personal experiences from people. If you are interested in checking it out, please go to lupusuk.org.uk/lupus-and-re...
If you need more information about lupus following your recent diagnosis, our full range of publications are available to read and download for free at lupusuk.org.uk/publications/
Hi there first of all congrats on graduating, personally I feel that telling people pretty much straight off about my conditions not only gets it out there but also gives them a chance to run before I get too emotionally invested. I honestly would hate being invested & starting to trust someone for them only to bolt after hearing about my health. I understand that's it's scary but I look at it as not only being honest but also as helping raise awareness, hardly anyone (in the big picture) knows about Lupus & at the very least your just spreading the word. Like you said it's scary but if the potential partner is even a half decent person they will ask questions & if you can't answer them directly you can look for them together. When people want to know more take this as a good sign. I hope this helped & please remember there are people out there who care it's just a matter of finding them & they aren't always that hard to find. Good luck xxx
I got diagnosed in 2011 just before my graduation and i that time i was keen on relationships. My doctor gave me an advice in 2012 when i had my 1st lupus breakdown. He said two things i should not be bothered by finances and relationship. He said lupus is stress related and if u let urself be over burdened by thoughts of relationship, that wont be ideal for ur condition.
My advice is ' learn how to understand ur body'. Come to terms with the changes lupus bring to u. Make adjustments to suit ur present health condition. I am not in a relationship so i may not be the best to advice you. Try to be as normal as lupus permits make ur family understand you need help. When Mr right comes you will tell him when the time is right.
Do not worry about 2mro let 2mro worry about itself. If you are a person of faith then pray for inner peace and calm. Ask God for that companion you want and relax. Just bare in mind that u can do nothing by worrying. You can only complicate ur condition. I believe that you will be in a loving and understanding relationship when ur mentally and physically ready to have one. Take life easy " one step at a time". You will be fine. Take care and God bless.
Thank you for your kind words! I think it is just because I don't like to be crippled with fear when it comes to relarionships. I know that in the end of the day, lupus or not, everyone is scared in investing themselves in a relationship and fear getting themselves hurt. I really do feel a lot better listening to your advice and i will first focus on the already exisiting relationships i have with myself, my loved ones and my Lord.
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