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    Unhappy How do I help him understand?

    I need help making my live-in boyfriend understand my new circumstances. He's been informed of my complications, and of course of my recent (somewhat of a) diagnosis of Lupus/Systemic Sclerosis, but he's not getting it. I may be a little sensitive, but it just seems like he's treating this diagnosis as one similar to having strep throat and that I'm 'over-reacting'.

    And hell, maybe I am. I'm a little scared, a little relieved, and EXTREMELY confused. There's not a lot out there about SSc and it's hard understanding these overlap diseases. I'm sure those of you with overlap understand. (Is this the Lupus? The Sceroderma? The sun? Is it just a cold?)

    I've tried asking him to educate himself, but that hasn't happened. Maybe if I force him to learn about it? LOL.


    As far as signifigant others go, I can't complain. And it's not that he 'doesn't care', it's more that he doesn't know how to show it.
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

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    He like you, is coming to terms with the diagnosis and I would gently work on getting him on board because behind closed doors of your home, you are fighting the same corner, you are in the same team and cannot afford to have 'enemies'. Whatever anyone outside thinks, it is him that you need to educate.

    Ask him to come with you to your next appointment, discuss it with him when you feel calm, do it in an educational kind of way rather than an 'I am sick' kind of way, that is how I taught my husband. My hubby now sees the sunshine and orders me to put my hat on, he knows when I am having a flare and even spots my face looking 'sucked in' as the Sjogrens dries me out.

    He is at a different stage to you with regards to acceptance and it will take time and patience, dont bombard him with your symptoms, just tackle it in bite size pieces but encourage him to go with you to your appointments.

    It is so hard to come to terms with an illness, I dont know about you but I was so relieved to get a diagnosis, it is only now I think 'damn it, I am saddled with what I can only describe as a hostile lodger in my body' and now I am over it and want rid of it. Then you realise it is for life.

    Hugs to you because it sure takes a lot to get your head around it. Give your partner a big hug, no words to be said when you hug him, just give him one of those hugs that says 'whatever happens, we will be OK and get through it'.

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    2 things i found very helpful are;

    "a letter to normal people"
    and
    " john hopkins medical centre
    Lupus Information
    by Michelle Petri, M.D., M.P.H."

    the first reference is to a letter written on the lyme desease blog, but now used on many sites.
    i heard about it on here.

    the second one was a thread here.
    hopefully one of the moderators can give you the link.

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    Thanks guys. Great suggestions. Steve, I'll have to google the first one, but I've read the John Hopkins one and it definetly seems like having him read that would be a good idea.

    He's actually already making progress, LOL. Just yesterday he picked me up from work and I was in a whiny/moany mood. I said "Ughhhhhh my joints are hurting so bad." And he replied, "I'm sorry babe." and grabbed my hand. It sounds like nothing, and quite petty, but it's a start and it definetly made me grin inside to know he's starting to (try) to see my pain.
    "Rule number one is, don't sweat the small stuff. Rule number two is, it's all small stuff."
    -Robert Eliot

    Dx: Potential Lupus, Diffuse Systemic Sclerosis, Mixed Connective Tissue Disease

    Rx: Prednisone 5mg 1x daily, Lyrica 75mg 2x daily, Omeprazole 200mg 1x daily, Xanax .5mg prn

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    Just an idea. You might try checking out You Tube for a video on Lupus. I found a really good one on Fibromyalgia, where a sufferer explained how she felt with fibro in pictures and words. He could sit down and watch a video, which would only take a few minutes of his time to see. Then perhaps he would be more empathetic to how you are feeling. Also, there are some educational ones too. You could preview them first and then put on the one/ones you would like him to watch.

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    Have him read "The Spoon Theory". It has helped many understand a bit better

    The Spoon Theory
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Sometimes significant others just don't know how to respond. Sometimes they're scared themselves about it and diminishing the disease is a sign that they're scared, in denial. not sure or just don't know how to respond. Its good to see that he is actively trying it gets better when there are willing, patient and loving partners involved.
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

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    A Letter To "Normal" People
    This excellent treatise from someone who understands the inside workings of chronic pain or disability was taken from a Lyme Disease blog... but it's so appropriate for anyone who has a family member who lives with chronic pain or if you deal with chronic pain in your own life. It gets old really fast to hurt all the time, and it feels sometimes like nobody understands.... (if you are the author or know who is, please let us know so we can give proper credit. It's a very good explanation of how it feels to hurt or be debilitated in some way.)

    "A LETTER TO NORMAL PEOPLE"

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand:
    These are the things that I would like you to understand about me before you judge me.

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

    Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

    Please understand that if I say I have to sit down,lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

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    Quote Originally Posted by steve.bryce View Post
    A Letter To "Normal" People
    This excellent treatise from someone who understands the inside workings of chronic pain or disability was taken from a Lyme Disease blog... but it's so appropriate for anyone who has a family member who lives with chronic pain or if you deal with chronic pain in your own life. It gets old really fast to hurt all the time, and it feels sometimes like nobody understands.... (if you are the author or know who is, please let us know so we can give proper credit. It's a very good explanation of how it feels to hurt or be debilitated in some way.)

    "A LETTER TO NORMAL PEOPLE"

    Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

    In the spirit of informing those who wish to understand:
    These are the things that I would like you to understand about me before you judge me.

    Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I'd still like to hear you talk about yours, too.

    Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. that's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

    Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

    Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "concentrating", "being sociable" and so on, it applies to everything. That's what chronic pain does to you.

    Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "But you did it before!" or "Oh, come on, I know you can do this!" If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

    Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to "get my mind off of it", may frustrate me to tears, and is not correct. if I was capable of doing some things any or all of the time, don't you know that I would? I am working with my doctors and I am doing what I am supposed to do. Another statement that hurts is, "You just need to push yourself more, try harder". Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn't you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

    Please understand that if I say I have to sit down,lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can't be put off or forgotten just because I'm somewhere, or I'm right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

    If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. Lord knows that isn't true. In all likelihood, if you've heard of it or tried it, so have I. In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies. It also includes failure, which in and of itself can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we'd know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It's definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor.

    If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

    In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the "normalcy" of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

    I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.
    OK Steve. That just made me cry. I guess I needed to read that. Thank you. Not just for this letter but for being you and being such a valued member of our family
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Lexie,
    The thing that I have learned about men is that they have a great desire to just fix things that are wrong. That's why they are often so bad at being listeners when we just want to talk about something. They are always thinking ahead to how they can fix the problem, when all we want is a hug and "I understand, honey". My hubby is an engineer, which makes his desire to fix everything even worse!
    You might try giving him some concrete jobs that can give him a way to be doing something to help you. What comes to mind is to ask him to keep track of your meds and to make sure that you are taking them on time, or to put him in charge of keeping a chart to keep track of your symptoms. My hubby loves to do research, so his "job" is to track down any new research that is going on concerning AI diseases and send me the links. You know your sweetie and his interests, so you're the best person to think of a task that he might do. I know that Jeff is frustrated that he can't do something to make me better, so he really throws himself into doing that research.
    Always keep him "in the loop", so that he feels that he is involved in going through this with you, and reassure him that you really need his help.
    Hugs,
    Marla

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