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Hello everyone, I am looking for some advice about how to support and care for someone with lupus. My boyfriend and i have been dating for 2 years now. I met him through a friend who told me he has lupus and "is always sick." I didn't know what lupus was so of course I looked it up. It all seemed pretty clear but of course learning about an experience isn't anything like living it. So 2 years into the relationship and I still struggle with how I should treat him when he is sick. I myself have experienced prolonged depression, anxiety, and OCD and understand how detrimental it is when your family and friends aren't there for you and don't understand. I don't want him to feel rejected because, in all honesty, I tend to have a short fuse and can get irritable mostly due to my anxiousness. Sometimes I react apathetically and down right carelessly because what I didn't know was that for some people lupus isn't on and off but a conitinupus struggle. His is a continuous struggle. So I want to point some things out. He has attempted suicide twice, one as a teenager and another as a young adult. Last time was almost three years ago. I don't think he'll ever try again as he is pretty stable but of course experiences depression due to pain and lupus. Why I am posting this now is because last night was the first time he has cried to me about it and was saying things like "I hate these realizations." I would ask him what realizations and he would say "that I have to live like this forever." He also said "I don't want to be on steroids forever." He hates how they make him feel. I try to relate because the way he says they make him feel sound a lot like how I feel when I'm pmsing, although I'm sure it's very different. He is actually a really happy and optimistic person. He has an abundance of energy and loves life. And when he is that way it is infectious and beautiful. But when he is in a flare he groans and is clearly in pain. I try not to get irritated with him but he is really careless about health care and it drives me crazy. For example, he refuses to get a family doctor! He will go to work when he is sick. (he is a car mechanic which I think makes his condition worse). He is in such denial at this point that when he does go to urgent care he tells them "they say I have lupus but I'm not sold on that." He is trying to force a mentality of health but I'm afraid it's hurting more than anything else. I really don't know what to do and if I try to give him advice he'll get frustrated and just repeat "I know, i know." I have had to force him to the doctors a few times bc he was so violently sick and honestly it is exhausting. I feel selfish but it's hard taking care of someone who is in such denial that they won't seek proper health care. I feel like I'm being a b***h because he is truthfully an amazing boyfriend but he doesn't understand that his job isn't just to take care of me but to also take care of himself. What should I do? I've tried to get him to a see a doctor regularly. I've tried to get him to apply for jobs that won't exhaust him and make him feel worse. I've looked inwardly and tried to be more understanding but it is so difficult to always be patient and empathetic because I also have my own struggles. Is it true that steroids are the only way to subdue the symptoms? Is there other medication out there that can help without negative side effects? Any advice will help. Thank you so much.
 

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Welcome to the site Lesliejane.

Your boyfriend is fortunate to have someone willing to take the effort to understand his disease and daily struggles. Lupus isn't an easy disease to deal with. It sounds like he has been in a state of denial and has just come to the realization the disease is not going away so this is a good time to give a gentle nudge toward proper health care. He not only needs to see a GP but should be in the care of a Rheumatologist.

Prednisone is not the only medication used to help Lupus symptoms. In fact most doctors try to limit the use of it due to its side effects. Our main site has the information on medications used http://www.thelupussite.com/treatment/lupus_medications.html.

Take care,
Lazylegs
 

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hello I also am a partner of someone living with lupus. my girlfriend got diagnosed in july of 15 so we are still new to adjusting our lives and learning how to cope with it. she went through the worst of it before we were together, before receiving the diagnosis. after being diagnosed, she was put on the appropriate medicines to lessen the affects of the disease. she is on a disease modifier (hydroxychloroquil) and once a week injections (methotrexate). she also takes takes various supplements to promote a heathy response to inflammation and heart health and stuff like that. it is hard to watch someone you love so much have to deal with that. I'm sure he is appreciative of any effort you make to help him.
 
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