Hi, my girl friend has lupus and has had since four years old.I am really struggling to understand the condition. She mentioned to me that she has been struggling recently and thinks she might be having a flare up. I have noticed she has been very distant toward me and not herself around me but she still tells me she loves me. I don't know if this is part of LUPUS.
I have and continue to be really supportive of her but it feels like that support and love gets thrown back at me. I just can't seem to do anything right to make it better for her. This is the first time I have met someone with LUPUS and I just want to understand whether this is part of LUPUS and what I can do about it.
Thanks
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perryrc1
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Firstly what a true gentleman for reaching out for some advice, you are an amazing man.
Secondly I haven’t been diagnosed with lupus, currently UCTd . I am a single female and I often wonder how relationships work. I get a lot of feedback from others as I think I’m scared of meeting someone because life is so up and down for me.
I think the hardest part is for you and her, you never know what your going to get from one day to the next. I often feel like it must be like living with bipolar. Of course a lot of the pain is very hidden and it’s hard for others to relate how much pain a person can be in when they look so well.
As for our emotions, some days I feel really upbeat and positive and then the next this draining fatigue kicks in which strips you of your true identity, there’s little happy thoughts and very little emotions. My children struggle with this side of me as I can’t tolerate noise or touch. For me fatigue, I explain as having just woke up from surgery and left in that groggy just been woken up stage for days on end sometimes.
There is an admin called Paul Howard on here, he will most likely be able to send you some further information and advice.
I hope you find lots of useful tips and advice here. Xx
Lisalou10, you explained that very well indeed, I feel sometimes how thankful I am that I am a pensioner and not looking for romance in my life.....I feel so sorry for you young ones suffering with this horrible illness I went for years with lots of symptons ( as I know now) before my diagnosis 2 years ago.....Its to be assumed that I have actually had Lupus, RA< OA, and Fibmyalgia for approx. 15 years now....I have looked for as much information as possible to find, changed my diet, altered my day to day activities....my advice to the boyfriend would be also to do this but also to talk(discus) everything with his girlfriend and be very patient with her
I have lupus and agree wit lisalou's description of foggy brain and it being like bipolar. I had a bad spell last year with mood swings and depression but I didn't want to take anti depressants. my GP explained to me that with lupus you can get into a circle of fatigue and insomnia and this can be helped with mild antidepressants. It's more of a hormonal chemical imbalance than an emotional thing but if left can affect emotions too. since taking the tablets I do sleep better [not great but definitely better] and as a result my moods have lifted and have become less changeable. one of the main problems I have with lupus is that even if I feel great I can be hit with fatigue or pain out of the blue and no preparation can help, I think it is this cloud of uncertainty that makes us moody.
Ditto to what the other two have said- only I have Sjögren’s syndrome and hypothyroidism but same things apply. I can’t seem to even get through to my husband or sisters how erratic this disease can be and how unpredictable. Although these are physical autoimmune diseases I guess in this sense they can make us seem remote, angry or obsessive a bit like people with bipolar disorder.
When well meaning people say “oh yes I’m feeling tired today too” or “well we all get headaches” or this sort of thing.. it’s hard to get through to them that we have to cope with this flu-like sensation plus headaches and multiple symptoms and know it probably won’t get better in the long run. I’ve given up trying to explain to family and friends that I can’t plan my days as they wish me to. So we withdraw rather than try to explain.
Perhaps it’s all this and your girlfriend just doesn’t want you around to see her when she’s flaring up like this as she thinks it will put you off or be difficult for you to deal with?
Take care and carry on being kind and wanting to understand Lupus better. Plenty of posts here that should help.
I have 2 good friends who I seen regularly in the past, butI now limit days out with them simply because they either don't or wont' understand my illness and why I can't be the jolly person all the time.....its hard enough being ill without having friends who think you are exaggerating "a headache or other pain" just for a sympathy vote... sometimes I think they should live just a hour in my shoes
I agree with the experiences others have had, but please, everyone, be careful in your terminology. I’ve been bipolar most of my life so now the autoimmune problems are added. Saying something is like “bipolar” is to me, how one might feel about Sjögren’s being “just” gritty eyes or Raynaud’s “just” cold hands.
What I experience with in the autoimmune part of my life is nothing like fairly stable or unmedicated bipolar disorder. I can tell the difference. The physical stuff is a **** though !
Sorry, I’ll get off my high horse now. Very cranky after a physio session yesterday that had nothing on the Spanish Inquisition. 😂
Please keep on with your great kindness and love for your girlfriend x
So I'm reasonably newly diagnosed... and I have a very eccentric Rheumatologist who, when I last spoke to him regarding my low mood and frequent mood swings and angry out bursts stated 'They don't call it Loopy Lupus for nothing'. He went on to explain that Lupus suffers often suffer from Physosis. Having been undiagnosed for at least 5 years and suffered from various forms of mental health issues, rather than offend me I found comfort in the fact that I'm not a complete Physco I just struggle sometimes with everything that goes along with feeling generally ill, exhausted, in pain etc etc. This boils over in fits of anger (why me), self pity (again why me) and frustration that many people just don't get it.
My poor other half has to deal with the emotional rollercoaster on an almost daily basis and I have to constantly remind myself to thank him and tell him how much I love Him and respect him for putting up with me.... after all I didn't choose to have this all consuming condition but he certainly didn't sign up to it either.
We have some amazing arguments, sometimes of the smallest things but I try to warn him that I'm struggling and ask he that he try to be understanding with me.
He struggles almost as much with my Lupus as I do and think the fact you're on here looking for advice shows that you are a very thoughtful, caring person.
I could tell you it gets easier but I honestly think it would be a lie.
What I can say is the more you under stand about the condition the better you will be able to cope with your girlfriends coping mechanisms.
If she's distancing herself there could be a million reasons and probably not one of them will actually be to do with you, she may be in pain, tired, irritable or self conscious about her behaviour, her appearance etc.
I sometimes look in the mirror and barely recognise myself due to the impact of the condition itself or the drugs side effects.
Bare with her, talk to her about how your feeling as well as how she's feeling and hopefully you will find your feet with it all.
Xxx
Like Twitchytoes, I don't have Lupus but Sjogren's Syndrome and I can relate to all the comments here.I often need reassurance, but reject it when it's offered. When we say 'tired', it's not the sort of tired that a nice nap will get rid of. It's an all consuming total exhaustion that makes us just want to lie down forever. Difficult to explain.
Welcome to the LUPUS UK Community Forum and thank you for posting. I think your girlfriend is very lucky to have someone who would take the effort to learn more about her condition and how best to support her.
I can see that you've received loads of helpful comments from members of this community who have lupus and there isn't really much I can add. We do have an article on our website about lupus and relationships which may be of interest to you - lupusuk.org.uk/lupus-and-re...
If you have any more questions or need information about anything in particular, please let us know and we'll do our best to help.
Dear perryrc1 the thing is you are making every effort to understand and that is so positive. I was only diagnosed with Lupus and other autoimmune conditions end of 2018 and at the time I was in a relationship with someone I've known for many years. He knew I had Fibromyalgia from 1996 but when I became very ill last year and told my partner I'd been diagnosed with something else I think it scared him. Even though I have Fibromyalgia it was well controlled so he had not really seen me in extreme pain and with chronic fatigue.
Last year into this year my mood was like a rollercoaster anger, frustration and despair sometimes all three at once. At the very darkest times I wondered if I would ever feel well enough again and that's when I found 'rock bottom' had a basement. I literally pushed everyone away including my adult children initially I didn't even understand what was going on in a body that no longer felt like my own. My partner is now my ex, it saddens me but at the same time there's a sense of relief. I think that's because I need to understand and come to term with symptoms, diagnosis and the complications of medication and working when I can. Anything else alongside those things just seems too hard. We have mutual friends so he probably now knows what these conditions and how I'm affected and although we have remained in contact he has not asked about my health when prior to this he used to all of the time.
Have you sat your partner down and said you both need to explain to each other how your feeling, preferably not when she's in a flare? Effective communication is key to healthy relationships. Don't assume you know what she's thinking and I imagine she's not a mind reader either. Hang on in there, it takes courage to keep seeking solutions hopefully the two of you will get there.
Or, she may just need time to herself to rest and take care of herself during a flare. With a flare comes fatigue and pain, brain fog for some, anxiety about how long the flare will last and if it will get worse - it's difficult during this time to manage partners, family and friends. She probably appreciates your support very much, but also remember to give her space if she needs it and try not to take it too personally.
Yes, you are right, during a Lupus flare everything can go out of whack. The Lupus individual may not even understand herself, trying to decipher is it a lupus flare, have a picked up a virus, or is it a mixture of both or something worse with lupus affecting a different part of their body than normal, that they are used to.
It definitely affects the brain, it is called the Lupus fog. During those times are brain does not work as well & we are not able to recall information like we normally do, we may enter a depressed state due to the incapacity of dealing with the situation, plus flares require lots of rest. And during those times when we are trying to heal ourselves, reaching out to others is not the top of the list. In fact, when we do have to converse with family members we live with or on the phone, it may take more energy for the conversation than we actually have to give it at the time. For some people a couple of days of rest maybe all they need, for others it may be longer.
The best way to explain it it's like someone who has the "flu constantly", so as you are recovering from the flu everyone knows you have to rest in order for your body to regain its strength and not let the flu get worse and affect other organs. In the same way, we are trying to rest so that we can keep Lupus in check. It takes a special friend to be a friend of Lupus 'Patient, because the Lupus person never knows when the Flares will come. One day you may be great and plan great things to do the next day, but the flare hits and you're out of commission. Friends may think it something you have against them, but it's not, it never is. It's Lupus patient/ thriver trying to get back in control of their bodies. We live in a very uncertain world, that has become our new norm. But by listening to our bodies, and not trying to push through when the body is screaming at you to rest, we are so much better. We have to plan carefully and cautiously, and with the proper rest before and after major events and staying out of the "sun" which immediately will throw most lupus patients into a major flare, we live our new normal lives. We hope our friends that are true friends will understand, and give us the time we need to recover.
So let your friend know you are there for her when she has the energy to go again, and you won't even notice she has lupus, and she will be ready to get out and enjoy life with you.
Hello Perryrc1......I have Undifferentiated Connective Tissue Disease, psoriasis and Hashimotos Disease. Coping with autoimmune conditions can be very difficult and I often withdraw and isolate myself when I flare. Sometimes I just don’t have the energy to deal with other people and getting others to understand how I am feeling can be very difficult.
My husband is wonderful. He is calm and patient with me when I am unwell. He knows when to leave me alone and when to provide support. When I push him away it’s because I want quiet and rest (he knows that I love him unconditionally). When I want to talk things out he listens. When I can’t get out of bed he brings me cups of tea and snacks.
Lupus is tough on our loved ones but we need supportive people around us. I suppose we can seem very selfish at times. We don’t want to be but to cope with these chronic diseases we have to listen to our own bodies.
Patience and understanding are the keys to helping your girl. Help her get through the bad days and make the most out of the good ones.
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