my partner has SLE

Tammy,

Like with any chronic illness, those around the person suffering suffer too.

I believe educating yourself on the disease, lupus, or as I call it, "Poopus" will help you in understanding what she is going through.

I too am a *** with a partner and it has been difficult from my perspective; I am the one with the Lupus.

The song, "Diamonds falling down" by Rob Thomas was written about his wife who has Lupus....it is perfect in description, if you imagine what his lyrics mean, of how it feels from his side and how difficult it can be.

I know there are days when I push people away....I do this because I can barely deal with how I feel that day let alone deal with things like relationships, friendships, chores, etc.,

There is a certain amount of depression that comes with being diagnosed with a chronic disease like Lupus...also anxiety. Imagine the grieving process when you loose someone dear to you...the stages of grief....most times those with chronic illness go through the very same stages.

Sometimes the effects on the neurological system, in Lupus, can cause anxiety, depression, and other abnormal behaviors in a person. Add to that the medications used to control the symptoms which have a entire list of both physical and mental side effects....you then begin to see all the variables.

Have you spoken to her about how she feels? What it's like to have Lupus? Is she sad? Is she anxious? Is she afraid? It's important to not only have been witness to the affects of Lupus but to ask the person with Lupus what it feels like; you can learn much in doing this and in-turn it will assist you in knowing what to concentrate on.

I hope things go well for you.....my best...

You are very wise in your assessment of how what you do affects her, etc.,

It is very courageous and kind.

My "partner" said she always assumes everything is fine as I don't explain fully how I feel; I tend to minimize it with simple things like..."My wrists ache." When really I should be saying, "My fricken wrists hurt so bad, like toothaches and I can't tolerate it!" Does your "partner" do the same?

I think this comes from a fear of feeling like a hypochondriac if you say too much about it too frequently and it is something those with Lupus know very well. We look fine by outward appearance and society has this thing that if your not gushing out gallons of blood...nothing is really wrong with you. I know this from being hard of hearing....it can't be seen, my hearing deficit but it exists as I exist.

Don't be surprised if she doesn't share too much at first regarding her feelings.....that is normal too because sometimes we haven't processed the emotions we feel well enough ourselves to relay them back to others. As she begins to trust that you will not judge her as a hypochondriac she will begin to give you more of how it feels.

Wow I need to start proofreading before I submit :)

Yes my partner does minimize and I don't know how to ask her how she really feels--I am a master of fluff, but to really know how to ask how she feels I don't know how. I mean I do say "how are you feeling today" and then she says just like you said my hips hurt, I didn't sleep well--she minimizes--I know those are fluff answers and I have asked a fluff question so why would I expect her to answer with real feelings--I don't know how to rephrase so she really let's me in and tells me how she feels--I want her to be able to start leaning on me for support--time I know. And also I don't know how to respond to her saying she hurts and doesn't feel well or sleep well I feel like any response I have minimizes her struggle--if I don't know how to respond to the fluff I certainly am not going to know how to respond to the whole truth of how she is feeling.

Can I ask her if she worries and is afraid of talking too much about her illness and the pain? The trust you talk about that she probably doesn't have in me I know can only come with time--I just want to learn all the right ways to communicate and approach her because like I said everything I know how to do to help someone doesn't work on chronic illness.

I can't even begin to express my gratitude for finding this website today--much anxiety, fear and loneliness has left me just by talking to you today. I'm trying not to beat myself up for not knowing what I didn't know and she is so forgiving of me--this morning she told me it was ok because I had no way of knowing until I went through it and in some weird way that hurts me because I put her in a position of having to forgive me when I was trying to be the strong one and here all the time she was being the strong one--if I have come to understand anything today it is that ego and false pride have no place in loving someone with a chronic illness.

She does take anti-depressants and I guess my question is during a flare is it common to increase the dosage of the anti-depressant? She has had the same doctor for 15 years and trusts her and has faith in her--I don't interfere in that at all--I just offer to go with her and support her and share in medicine changes and so on. That is none of my business right now and may never be.

I will search for the story "The Spoon Theory" online now. I can't even begin to express to you all that she means in my life--the only thing I can say is that I am a professional writer and she is my muse--that is what she brings to my life. I adore her special falls short. Thank you so much for your help today.

HickoryOne how are you today?

Thank you and Good Morning--I do intend to be there and yes you described what happened and what is happening perfectly--I'm being pushed away because I would be better off--but not completely pushed away there is just enough room for me to have hope--and I didn't help by thinking I got it I'm all set--I told her the other night that the hurt is overwhelming--she was there one day and gone the next and I have been going out of mind because it was like I didn't have a chance to say good bye or say see you on the otherside.

The fellowship on this site has also been amazing. Thank you so much. Believe it or not I was actually able to comunicate with her last night and told her I know I struggle when you drive by the exit how does it feel for you to know you have to drive by my exit. We'll see if she answers.

And I worry that asking her every day how she feels just reminds her that she isn't feeling well--but I guess she never forgets and so since the condition never leaves when I add "can I do anything for you today" to "how do you feel" it isn't a reminder anymore it is acceptance that I know you are hurting, I want to be a part of how bad it feels and I am available if you need or want anything.

We had a whirlwind romance before reality set in and we never courted--so now I will court her for however long it takes to have that moment you described when I least expect it that she will "cry or hug or talk or whatever to share her feelings with me."

You gave me hope this morning and some patience--I am a "I want everything now" personality and that just doesn't work with chronic illness. You all are teaching me a new way to live--thank you. Love, Tammy

You will learn to know how she's feeling without asking.

Remember to take time to do things without her, for yourself - it's good for you and decreases the guilt for her.

It sounds like you are already familiar with 12-step recovery programs - you might consider AlAnon - it will be helpful. Living with Chronic Disease is not all that much different from living with Alcoholism.

TammyJ said...
instead of asking her how she feels I did the opposite and tried to pretend everything was ok--that is all I knew how to do--but it so the wrong approach.

I am experiencing the same thing with my boyfriend, only I'm the one who is chronically ill and he's the one trying to comfort me. His approach is telling me everything is going to be okay, just as you have been doing with your girlfriend. When he approaches me in that manner it makes me feel as if he's trying to downplay or disregard the seriousness and suffering of my sickness. I feel like he doesn't believe me or thinks I'm silly when I say that I'm having a really terrifying time and that I'm scared I might die, when he's just trying to comfort me by saying it's going to be alright and that I won't die. It doesn't quench the anxiety, it exacerbates it. I feel lonely when he talks that way. He just doesn't understand what it's like to be that scared of his health. Try thinking about if you were sick; what things would make you feel better to hear from your loved ones? Hope that helps. Just ask her how you can help.

It may take some time to be on "the same page". Remember, the grieving steps I talked with you about prior.

I am three months into the actual diagnosis, after being sick over a year...wondering what was wrong, would they find out what was wrong, am I merely imagining all of my ailments, etc., I still go through the various steps of grieving at various times.

The actual diagnosis itself breeds anxiety, fear, and depression in most with Poopus....just as it would with any chronic condition.

There are no easy answers as one of you is sick and the other isn't, no cure for Lupus, it will be, if she continues to flare or stay in her current flare, a difficult road. Perhaps her seeing someone to talk about the emotions she has regarding Poopus would be helpful?

It is actually recommended on many sites that deal with the disease Poopus.

What I do is during my "windows of opportunity" after waking and having far too many cups of coffee, is to do all that I need to do for the day.....sometimes I succeed, sometimes not....but it gives me a sense of usefulness; not feeling so helpless before I am drained of energy or begin running a low grade fever.

She has to learn to "live with Poopus".....she has Poopus, Poopus doesn't have her. It's easier said than done and it's easy to get locked in a dark place if you don't recognize you are heading there and "cut it off at the pass".

my best......

Thank you all--I don't know how to respond to I CAN'T HANDLE THIS!!!! STOP!!!!! in any other way than to stop--she is right that I don't have the capacity right now to just be her friend because as much as she is afraid and is saying she wants be alone she dangles these little carrots of hope that I fall for and then a couple of days later she takes them back.

I'm not helping her and I am not helping myself. I have a couple of ideas for projects that will help caregivers of those with chronic illness and I think my energy is best spent on that. I can't make her do anything she is too afraid to do--that willingness and courage has to come from within her--I just have to be me and either she changes and works through her fear or she doesn't--there is nothing left for me to do but live my life, love her from a safe distance for me and pray for her.

Thank you. What a process and learning experience this all is--we get wrapped up in our own little worlds and we have no idea how much the person beside you is going through.