I have a direct question is their a social life after lupus,I have a long time girlfriend she has been married for years and she has lupus but she is married.I was dignosed with lupus 2 years ago and I hear so many scarey stories and I endire some myself and wonder is my life going to be pain and pills and surgery.I have been invited out with the opposite sex and it has been 5 years since I went out on a date. I don't want to live alone and yearn for companionship but with lupus u never know from day to day how you are going to feel let alone be plan for or sideeffects..CONFUSED.Any suggestions?
The only suggestion I have is don’t be afraid to live! What’s the worst that can happen? You can’t go out due to a flare? You would not be any different then not going out at all. If this person does not understand that then they are not worth your time and effort anyway!
I was just at Six Flags amusement park with my 9 yr old son, his best friend and family! My son wanted to ride every CRAZY roller coaster with his friends and me. I had always loved them, but with all the meds I now get nauseated. i decided that I dreaded him going on all these HUGE rides without me to protect him…and most of all enjoy! My husband can’t do these type of rides at all and it has always been me! I decided that I never know when I really won’t (or if) I will be able to ride roller coasters again with my son. You ever know how you will feel. So I took a Zofran and bit the bullet! I went on every ride and over 30 loopty loops and corkscrews! i enjoyed every moment!!! I will never regret, even a moment, of that amazing time with my son! Carpe Diem! You only live once and you should really try it all! If it works GREAT, if not, no regrets or “what if’s?” Lupus will not define me! My family and Motherhood will. I plan to live. Anything can happen to anyone! Just giving in will only make it worse and you will miss out on what we are now offered in 2014 to enjoy, that 30 yrs ago did not exist!
Best of luck!
Great answer!!
Thanks for the input I really appreciate sounds similar to what my mom said to me ,my motto with this lupus is I have lupus,lupus doesn't have me,Thanks again.
I thought I would throw my two pennies in. I’ve been diagnosed with lupus for over ten tears (I was in my very early teens when I got sick). The guy I was dating at the time pretty much went through it all with me, tests, drs visits ect. We had been dating before I got sick, if it had been the other way around and knowing him he wouldn’t have stayed with me as long as he did (7 years)but I think he felt partially to blame for the rapid increase in symptoms and pain levels because due to his job we moved a lot…sometimes only staying in one place for a few months. Every move meant I had to jump through hoops with my insurance, research doctors, try to get in on the waiting list. Some times we moved before my proverbial number was up. So the search would start again. We ended things, not is a great way, but I’m glad I’m free of that relationship.
Since then I’ve had relationships with three men. The first was this artistic bohemian free spirit sort of guy. We did amazing things together but he was the type of guy that worked a minimum wage job just enough to have a roof over his head and food sometimes in his belly. He would lay around on my pain days drawing me pictures or writing his novel. In another life where I would have been able to work too, it possibly could have been a long term thing. I didn’t break up with him ove materialistic things but I knew I needed someone who could care for me when I got hospital sick and someone who could help pay my prescriptions. Thankfully my insurance is amazing but I’m on about 15 different meds a day now, even the co-pays add up.
Guy number two was pretty much head over heels with me from the time we met. I explained what lupus, and my medical stuff was about, he was like if I can be with you, I will do what it takes. Then almost two years in he came home from work and said that he wished he was stronger and knew ways to help me but he couldn’t. Number two,gone. And I saw it coming a mile away, I had actually started packing weeks before. He was from a very dysfunctional family and I’m not sure he was ever capable of loving someone or allowing someone to love him, he used my illness as his crutch. And I stayed with him for that long because I decided that I would either be lonely forever or just have to deal with a less desirable relationship (those are the nice words lol).
Now we get to Mr. Three. We dated for just a few months between one and two. I was at a place in my life where I wasn’t accepting my illness very well, a few things had gotten worse, a few new things appeared…not fun. Here was this amazing man who wasn’t really a big extravagant sort of guy but did a million sweet and meaningful things all the time. Prognosis he is entirely too good for me. I knew once he found out about the illnesses a,d my mental health stuff too,PTSD,anxiety disorder…the list goes on, that he would head for the hills. I never gave him that chance because one night as we were saying goodnight I hugged him extra tight and said goodbye, for the last time. Rather than fess up to the conditions I have that are not in my control,I just disappeared off his radar.
Fast forward a few years, I happened to stumble upon a familiar face while I was in those iPad apps where they pair you up with a stranger in your town or across the world just so you can have a temporary pen pal. Up on my screen there he was, the smile I missed,his sparkly eyes and eyelashes that a camel would be jealous of. I didn’t feel it was my place to say anything since I was the one who fell off the earth, but you are notified if someone saw your picture. He recognized my name and messaged. It was awkward the first night talking to him through a screen but by day two we were back in the swing of things.
I promised myself that IF I ever got the chance to talk with him again, I’d come clean about everything. I didn’t want to overload him all at once so we tackled Lupus first. He had heard about it from some of his clients (he is a massage therapist) who have lupus so he was vaguely aware. He asked questions until my drowsy pills kicked in and I went to sleep, feeling a bit lighter. He texted me on the way to work the next day and joked that he was in zombie mode, I asked why and he said he had been up the entire night reading everything he could about Lupus. That blew me away. And he wasn’t doing it to find a way out, he did it because he wanted to know what to expect and how to handle situations when it comes up. That was nearly a year ago, he still takes off work to go to the doctors with me. I have shared my traumas from my past and he goes to therapy with me about once a month. Not to point out things I’m doing wrong, but to gain tools to help me. I need him in my life, he’s my protector, best friend and my duct tape (he’d even be hello kitty printed duct tape if it would make me smile). He says how proud of me I am when I push myself to do things out of my comfort zone and holds me while I shower his T-shirt with tears when it hurts too bad,emotionally or physically.
So after all that reading (and forgive me gushing about Mr.3, he is truly the most caring and compassionate person. The moral of the story is,there are men and women out there who have the most amazing way of instinctively caring for someone they love. Like me, you may have to wade through a buncha frogs to find your other half, but the second you stop with the internal voice that says I’m not good enough for a good person or relationship the world will open up to you.
One day I was in the throws of major lupus and fibro pain, had had an asthma attack, running a fever, butterfly rash, hair falling out, the whole shebang. I was at his house in bed, he was doing something in the other room, I weakly called out his name, he came running in the room, look of concern etched into his face, “I need you” with out second thought he was in bed had me wrapped up in his arms, giving me forehead kisses and he said something I will never ever forget, “Not as much as I need to be needed by you”. He has said even though he wishes he could take all my pain away and carry it for me,he is thankful he is the one that gets to help make it better.
So yes, it is absolutely possible to find love after Lupus. Never ever think you aren’t as worthy as someone who is healthier than you are. Thankfully I had been granted a second chance with him,I wonder what things would have been like if I had told him the truth from the get go. The worst thing that could have happens was him saying that he wasn’t able to deal with illness and mental health issues. Be open and upfront with someone as soon as you feel comfortable, probably not a good first date talk, but the sooner the better, that way you can weed the week from the strong.
He asked me after I told him all bout me, what did you think I’d do? I said I thought you would end it. He said even in that short time I knew you were special, it hurts to think you would think I was that shallow.
Thank you so very much for taking the time to share your ecperience with me ,I will always treasure the adventure of your life
ce uxDouxDoll said:
I thought I would throw my two pennies in. I've been diagnosed with lupus for over ten tears (I was in my very early teens when I got sick). The guy I was dating at the time pretty much went through it all with me, tests, drs visits ect. We had been dating before I got sick, if it had been the other way around and knowing him he wouldn't have stayed with me as long as he did (7 years)but I think he felt partially to blame for the rapid increase in symptoms and pain levels because due to his job we moved a lot...sometimes only staying in one place for a few months. Every move meant I had to jump through hoops with my insurance, research doctors, try to get in on the waiting list. Some times we moved before my proverbial number was up. So the search would start again. We ended things, not is a great way, but I'm glad I'm free of that relationship.
Since then I've had relationships with three men. The first was this artistic bohemian free spirit sort of guy. We did amazing things together but he was the type of guy that worked a minimum wage job just enough to have a roof over his head and food sometimes in his belly. He would lay around on my pain days drawing me pictures or writing his novel. In another life where I would have been able to work too, it possibly could have been a long term thing. I didn't break up with him ove materialistic things but I knew I needed someone who could care for me when I got hospital sick and someone who could help pay my prescriptions. Thankfully my insurance is amazing but I'm on about 15 different meds a day now, even the co-pays add up.
Guy number two was pretty much head over heels with me from the time we met. I explained what lupus, and my medical stuff was about, he was like if I can be with you, I will do what it takes. Then almost two years in he came home from work and said that he wished he was stronger and knew ways to help me but he couldn't. Number two,gone. And I saw it coming a mile away, I had actually started packing weeks before. He was from a very dysfunctional family and I'm not sure he was ever capable of loving someone or allowing someone to love him, he used my illness as his crutch. And I stayed with him for that long because I decided that I would either be lonely forever or just have to deal with a less desirable relationship (those are the nice words lol).
Now we get to Mr. Three. We dated for just a few months between one and two. I was at a place in my life where I wasn't accepting my illness very well, a few things had gotten worse, a few new things appeared...not fun. Here was this amazing man who wasn't really a big extravagant sort of guy but did a million sweet and meaningful things all the time. Prognosis he is entirely too good for me. I knew once he found out about the illnesses a,d my mental health stuff too,PTSD,anxiety disorder..the list goes on, that he would head for the hills. I never gave him that chance because one night as we were saying goodnight I hugged him extra tight and said goodbye, for the last time. Rather than fess up to the conditions I have that are not in my control,I just disappeared off his radar.
Fast forward a few years, I happened to stumble upon a familiar face while I was in those iPad apps where they pair you up with a stranger in your town or across the world just so you can have a temporary pen pal. Up on my screen there he was, the smile I missed,his sparkly eyes and eyelashes that a camel would be jealous of. I didn't feel it was my place to say anything since I was the one who fell off the earth, but you are notified if someone saw your picture. He recognized my name and messaged. It was awkward the first night talking to him through a screen but by day two we were back in the swing of things.
I promised myself that IF I ever got the chance to talk with him again, I'd come clean about everything. I didn't want to overload him all at once so we tackled Lupus first. He had heard about it from some of his clients (he is a massage therapist) who have lupus so he was vaguely aware. He asked questions until my drowsy pills kicked in and I went to sleep, feeling a bit lighter. He texted me on the way to work the next day and joked that he was in zombie mode, I asked why and he said he had been up the entire night reading everything he could about Lupus. That blew me away. And he wasn't doing it to find a way out, he did it because he wanted to know what to expect and how to handle situations when it comes up. That was nearly a year ago, he still takes off work to go to the doctors with me. I have shared my traumas from my past and he goes to therapy with me about once a month. Not to point out things I'm doing wrong, but to gain tools to help me. I need him in my life, he's my protector, best friend and my duct tape (he'd even be hello kitty printed duct tape if it would make me smile). He says how proud of me I am when I push myself to do things out of my comfort zone and holds me while I shower his T-shirt with tears when it hurts too bad,emotionally or physically.
So after all that reading (and forgive me gushing about Mr.3, he is truly the most caring and compassionate person. The moral of the story is,there are men and women out there who have the most amazing way of instinctively caring for someone they love. Like me, you may have to wade through a buncha frogs to find your other half, but the second you stop with the internal voice that says I'm not good enough for a good person or relationship the world will open up to you.
One day I was in the throws of major lupus and fibro pain, had had an asthma attack, running a fever, butterfly rash, hair falling out, the whole shebang. I was at his house in bed, he was doing something in the other room, I weakly called out his name, he came running in the room, look of concern etched into his face, "I need you" with out second thought he was in bed had me wrapped up in his arms, giving me forehead kisses and he said something I will never ever forget, "Not as much as I need to be needed by you". He has said even though he wishes he could take all my pain away and carry it for me,he is thankful he is the one that gets to help make it better.
So yes, it is absolutely possible to find love after Lupus. Never ever think you aren't as worthy as someone who is healthier than you are. Thankfully I had been granted a second chance with him,I wonder what things would have been like if I had told him the truth from the get go. The worst thing that could have happens was him saying that he wasn't able to deal with illness and mental health issues. Be open and upfront with someone as soon as you feel comfortable, probably not a good first date talk, but the sooner the better, that way you can weed the week from the strong.
He asked me after I told him all bout me, what did you think I'd do? I said I thought you would end it. He said even in that short time I knew you were special, it hurts to think you would think I was that shallow.
lia mason said:
Thank you so very much for taking the time to share your experience with me ,I will always treasure the adventure of your life and how true love is ment to be and I will never know unless you try,lupus takes so much out of you just to survive and allowing someone else in your life makes yo u feel so over whelmed and not makes you feel safe but lonely.Alot of people donot underatand about lupus and think you are just full of it. have always been a caregiver to my mother for over a decade and my ex husband and I know God will take care of me as he always have but I wonder from a mortal being is their someone for me just like you it surely makes you feel a lot better when somebody loves you holds you says you will be fine.THANKS AGAIN.
ce uxDouxDoll said:I thought I would throw my two pennies in. I've been diagnosed with lupus for over ten tears (I was in my very early teens when I got sick). The guy I was dating at the time pretty much went through it all with me, tests, drs visits ect. We had been dating before I got sick, if it had been the other way around and knowing him he wouldn't have stayed with me as long as he did (7 years)but I think he felt partially to blame for the rapid increase in symptoms and pain levels because due to his job we moved a lot...sometimes only staying in one place for a few months. Every move meant I had to jump through hoops with my insurance, research doctors, try to get in on the waiting list. Some times we moved before my proverbial number was up. So the search would start again. We ended things, not is a great way, but I'm glad I'm free of that relationship.
Since then I've had relationships with three men. The first was this artistic bohemian free spirit sort of guy. We did amazing things together but he was the type of guy that worked a minimum wage job just enough to have a roof over his head and food sometimes in his belly. He would lay around on my pain days drawing me pictures or writing his novel. In another life where I would have been able to work too, it possibly could have been a long term thing. I didn't break up with him ove materialistic things but I knew I needed someone who could care for me when I got hospital sick and someone who could help pay my prescriptions. Thankfully my insurance is amazing but I'm on about 15 different meds a day now, even the co-pays add up.
Guy number two was pretty much head over heels with me from the time we met. I explained what lupus, and my medical stuff was about, he was like if I can be with you, I will do what it takes. Then almost two years in he came home from work and said that he wished he was stronger and knew ways to help me but he couldn't. Number two,gone. And I saw it coming a mile away, I had actually started packing weeks before. He was from a very dysfunctional family and I'm not sure he was ever capable of loving someone or allowing someone to love him, he used my illness as his crutch. And I stayed with him for that long because I decided that I would either be lonely forever or just have to deal with a less desirable relationship (those are the nice words lol).
Now we get to Mr. Three. We dated for just a few months between one and two. I was at a place in my life where I wasn't accepting my illness very well, a few things had gotten worse, a few new things appeared...not fun. Here was this amazing man who wasn't really a big extravagant sort of guy but did a million sweet and meaningful things all the time. Prognosis he is entirely too good for me. I knew once he found out about the illnesses a,d my mental health stuff too,PTSD,anxiety disorder..the list goes on, that he would head for the hills. I never gave him that chance because one night as we were saying goodnight I hugged him extra tight and said goodbye, for the last time. Rather than fess up to the conditions I have that are not in my control,I just disappeared off his radar.
Fast forward a few years, I happened to stumble upon a familiar face while I was in those iPad apps where they pair you up with a stranger in your town or across the world just so you can have a temporary pen pal. Up on my screen there he was, the smile I missed,his sparkly eyes and eyelashes that a camel would be jealous of. I didn't feel it was my place to say anything since I was the one who fell off the earth, but you are notified if someone saw your picture. He recognized my name and messaged. It was awkward the first night talking to him through a screen but by day two we were back in the swing of things.
I promised myself that IF I ever got the chance to talk with him again, I'd come clean about everything. I didn't want to overload him all at once so we tackled Lupus first. He had heard about it from some of his clients (he is a massage therapist) who have lupus so he was vaguely aware. He asked questions until my drowsy pills kicked in and I went to sleep, feeling a bit lighter. He texted me on the way to work the next day and joked that he was in zombie mode, I asked why and he said he had been up the entire night reading everything he could about Lupus. That blew me away. And he wasn't doing it to find a way out, he did it because he wanted to know what to expect and how to handle situations when it comes up. That was nearly a year ago, he still takes off work to go to the doctors with me. I have shared my traumas from my past and he goes to therapy with me about once a month. Not to point out things I'm doing wrong, but to gain tools to help me. I need him in my life, he's my protector, best friend and my duct tape (he'd even be hello kitty printed duct tape if it would make me smile). He says how proud of me I am when I push myself to do things out of my comfort zone and holds me while I shower his T-shirt with tears when it hurts too bad,emotionally or physically.
So after all that reading (and forgive me gushing about Mr.3, he is truly the most caring and compassionate person. The moral of the story is,there are men and women out there who have the most amazing way of instinctively caring for someone they love. Like me, you may have to wade through a buncha frogs to find your other half, but the second you stop with the internal voice that says I'm not good enough for a good person or relationship the world will open up to you.
One day I was in the throws of major lupus and fibro pain, had had an asthma attack, running a fever, butterfly rash, hair falling out, the whole shebang. I was at his house in bed, he was doing something in the other room, I weakly called out his name, he came running in the room, look of concern etched into his face, "I need you" with out second thought he was in bed had me wrapped up in his arms, giving me forehead kisses and he said something I will never ever forget, "Not as much as I need to be needed by you". He has said even though he wishes he could take all my pain away and carry it for me,he is thankful he is the one that gets to help make it better.
So yes, it is absolutely possible to find love after Lupus. Never ever think you aren't as worthy as someone who is healthier than you are. Thankfully I had been granted a second chance with him,I wonder what things would have been like if I had told him the truth from the get go. The worst thing that could have happens was him saying that he wasn't able to deal with illness and mental health issues. Be open and upfront with someone as soon as you feel comfortable, probably not a good first date talk, but the sooner the better, that way you can weed the week from the strong.
He asked me after I told him all bout me, what did you think I'd do? I said I thought you would end it. He said even in that short time I knew you were special, it hurts to think you would think I was that shallow.
Just my two cents but you should do what is best to make you happy. I completely understand the yearning for companionship and not wanting to be alone. When I started really getting sick five years ago I had a long distance relationship. If I was lucky I would get to see her every four months and it was extremely difficult to be so sick and her being so far away still living while I was unable to move from my bed most days. It was the demise of our relationship. My best friend did not let me wallow in the depression of the break up though and for that I am extremely thankful because I now have the most wonderful wife who brightens my day with her smile. We have been together for three years. She has been through the worst of times with me and was there for the diagnosis of SLE. She was even still willing to marry me with all the medications, illnesses and hospital visits. We eloped on Halloween 2013. It may be difficult but I truly believe there is still a social life even with lupus.
Its a date go have fun and let us no how it goes your going to stress your self out my ex husband and i recently go back together and have started doing some things like trade day or out to eat and i feel better getting out of the house
Go!! Do not be afraid to live your life. You deserve happiness and companionship. You wont meet people unless you get out. I know its hard but good things can happen if you let them.