How do I communicate with my sister that has fibromyalgia?

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NamelessUser

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Hi, new member here.

My sister has been recently diagnosed, and although it was this October, she's been dealing with pain for at least 4 years. I've been trying to support her as best as I could, but I'm at the end of my rope.

We are roommates, and cohabitation has become difficult recently. She's had really passive-aggressive attitudes (such as taking all my clothes out of out wardrobe, using my clothes but then not lending me hers, etc.)

She's also had difficulties in her studies and uses me to vent. Aside from our conversations being extremely depressing, every time I try to give her advice on how she could deal with her studies better (like recording her classes) she proceeds to go on a 45-minute spiel on why that wouldn't work.

Some of the reasons are completely valid, for example some of the subjects dealing with programming and it being very difficult, or the concentration issues that stem from fibromyalgia, but others go a bit far, like none of her teachers knowing what they're talking about, or all of her classmates being annoying and entitled. I'm not saying that's impossible, it's just that the arguments change every time and when I point that out, she gets mad and refuses to talk to me. If I try to talk to her, she flat out ignores my existence (I should mention at this point that she's 20 and I'm 22, so it's not a child throwing a temper tantrum).

Other times she acts exasperated with me, like I'm stupid, or gets defensive when I ask her anything. At times that behavior gets so aggressive it leaves me with a lump in my throat.

The reason why I mention all of these situations is that I don't know how fibromyalgia comes into play into all of this. I've been to a therapist since May and they've encouraged me to speak out about the things that bother me. I can't do that with my sister because I'm scared she'll feel like I don't support her, which she's told me I do. If any of these behaviors are related to fibro, I'd do my best to take it in stride, but if not, how can I communicate with her that her attitude hurts my feelings?
 
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administrator

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My sister has been recently diagnosed, and although it was this October, she's been dealing with pain for at least 4 years. I've been trying to support her as best as I could, but I'm at the end of my rope.
This is unfortunate for her but often how fibromyalgia diagnosis unfolds with most patients. It can take a long time to get diagnosed, leaving the patient having to deal with all that comes with fibromyalgia themselves, for many years. This can lead to levels of depression among many individuals. It sounds like, after four years, your sister may be exhibiting some of these feelings of helplessness, frustration, and a short temper.

She's also had difficulties in her studies and uses me to vent. Aside from our conversations being extremely depressing, every time I try to give her advice on how she could deal with her studies better (like recording her classes) she proceeds to go on a 45-minute spiel on why that wouldn't work.
Specifically what stood out to me, and you'll have to judge for yourself, but her feelings that the world is against her, or changes in her attitudes will only lead to negative ends (which isn't really the reality of most situations). This sounds like depressive behavior or a negative outlook. Unfortunately, you trying to point this out to her will likely only lead to more anger from her, when in fact, you're only trying to help.

This must be very difficult for you, as much as it is for her. Imagine living in a world where you have constant pain and your outlook is "whatever I try to do will only lead to more unhappiness".

Her shutting you out sounds like unhappiness (or perhaps, clinical depression) at play; it sounds like she may be very frustrated with life, which usually means being frustrated with oneself.

Being happy, despite ones circumstances, is the reality of any situation. When depressed, we often internalize or direct all interactions within ourselves in a negative way. This can often mean very hard-coded thoughts and 45-minute spiels on why any effort will only lead to more negative outcomes.

When not depressed it's usually easy to see how some small positive changes can lead to more positive outcomes.

Studies have shown that depression is linked to 20% of patients that have fibromyalgia. To put that in perspective, generally depression only occurs in less than 7% of the general population.
Your sister, with a diagnosis of fibromyalgia and in her early 20's, is in a very high risk demographic.

I'm not a doctor, but simply based on experience and life experience this may be something to keep in mind when dealing with her.

I myself have dealt with depression and thanks to some hard work on my own I was able to overcome similar feelings and thoughts that your sister has on my own. There's some amazing reading. Of course there's drugs too, but those only help you get above water, what really works is changing the way you think.

What helps almost anyone with similar feelings and thoughts is Cognitive behavioral therapy (known as CBT).

There's a few great books I've read and it's amazing how 1-2 weeks of reading and 3-4 weeks of effort can be a life changing experience.
 
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Leigh Blyth

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I acted exactly like you describe your sister. My behaviour worsened until I finally started healing. It was really hard for those around me so I feel for your situation. Wanting to help but not being able to. Being treated like !**t. But she needs you. She's in a LOT of pain. physical pain. mental pain.

I had been in pain for years. My list of pain goes back to being very young.

Some with a 'diagnosis' none with a cure - just "try some painkillers" and live with the pain. "fibromyalgia" is a fancy word for otherwise we don't know widespread pain. Depression struck. I hated myself, the world, everything.

I wanted someone to notice. To really see how much pain I was in.

But there's really nothing to "see" on tests and I doubted myself. I felt the pain. And it was all real but I stopped believing it. I thought it was a fault with "me" not my body.

I have recovered by working with some key muscles - learning to use my body correctly. Starting with my Pelvic floor "Base" of the body and rectus abdominis muscles - my central "Line". find your Base-Line muscles. pictures easier than words.

1. Ask your sister to think back to when the pain started. Get an outline of a body and get her to start marking where the pain is. See how much pain she is in. Make a list over some time, so you can both see what it's like. I got very good at living with a lot of pain, realizing that was a part of healing - noticing it and working through it.

2. "venting" is a release of stress and tension, it is a good thing for your sister but terrible for you. She needs to realize that -and be able to say sorry when she's feeling calmer. It's the pain. It's hard to keep control, it's not you. Another outlet would be good. I used to scream into coats.

3. Don't give advice - it won't help! She's thought of everything you are going to say already hence the many different explanations, the brain doesn't stop when you are in pain.

4. Do give support. Hot drinks, hot water bottles .. whatever little things make life easier for her. She'll probably want to rage a bit more when you're doing the 'right thing' to help her - more release of stress.

Working with the 5 main muscles of movement - Pelvic floor, rectus abdominis, trapezius, rectus femoris and gluteus maximus - has changed my life.

I have connected with my body and learned to work towards balance and alignment releasing all the pain and tensions that were on my body, the stored trauma, the injuries and pains that just built up and up. The cause of all my pain.

I believe this is the key to healing for so many.
 
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toyoran

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If you can't handle each other maybe having a separate room could be an option?
 

administrator

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If you can't handle each other maybe having a separate room could be an option?
That's an option too, but sounds like the thread-starter (TS) is trying to manage the relationship in a more positive manner versus isolating her sister further. But if all else fails, maybe it's important she do whatever she needs to do to preserve her own mental well-being.
 

links56

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You have to understand that when it seems uncalled for and she's acting that way it's the only way she knows how to cope with it. I know it sucks for both parties but the more you push or try to reason with her, the more overwhelming she is feeling. When she's having a bad flare up and in pain it's taking all of her mental stamina to fight the pain so there's nothing left to help her act rationally, just short abrupt possibly hurtful responses. I think it's natural for people like us in the beginning, you turn your focus from bearing with the pain for 1 second and the full blow of the pain comes rushing back in so when an external situation arises that you have to deal with you want it handled as fast as possible so you can get back to gritting your teeth and bearing the pain. Hopefully over time she will learn to deal with it better, but in the mean time you unfortunately have to be the bigger person and take it and show your support. I think the worst thing you could do is separate yourself from her when she needs you the most. Let's take cancer for instance ( which took my mother when I was 6) not to say it's the same as fibro but if she had cancer and a certain timespan to live and was acting this way would you feel the same? Now picture someone in alot of pain and suffering confused scared even but not much relief in sight and no time limit on life, you just have to live this way until your time comes which could be a very long time. Try to put yourself in those shoes and look at the bigger picture. It's hard to get dressed some days for me let alone do laundry so she's doing that because it's the easiest way for her to get clean clothes and not become overwhelmed. My ultimate advice is to learn as much as you can about the ways we cope and read up on some routines, diets, etc and very slowly try to help her with these things. Remember what might seem slow to you probably won't to her, baby steps and it will take some time to make progress but obviously you care for her if you're posting on here so be the bigger person, be the rock of support and one day it will pay off and it will be greatly appreciated whether you get thanks or not at first.
 

sunkacola

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I agree only in part with what others are saying here. The more you know about Fibro, the more knowledge you have about it, the more helpful you can be to your sister. This part I agree with.

On the other hand, I also disagree with some of what others have said, especially this: " but in the mean time you unfortunately have to be the bigger person and take it and show your support. I think the worst thing you could do is separate yourself from her when she needs you the most. "

I do not think that you just have to take it if she is being aggressive or offensive! There is no reason in the world why you should remain passively taking abuse from her when you are trying to help her. If you simply turn the other cheek all the time, she will have no motivation to learn to cope in a mature and appropriate manner with her disease. And if she is going to live with fibro as most of us have and do, for years and years, she is going to have to learn how to handle it like an adult. This means, not taking out her frustration or pain on the people around her who are trying to help.

If you just let her treat you badly she will think that she can get away with that kind of bad behavior in the world, and this does her no favors at all, because she will end up alienating everyone around her if she treats people badly. It is hard enough for those of us with chronic pain and/or fatigue to hang onto friends; if she treats people with anger and aggression she won't have any friends at all.

As far as her always having an excuse for not trying the things you suggest, I would say that she is throwing up barriers for herself instead of being willing to explore any possible way of making things better. This is self-defeating behavior, and I know it well because I have been through that same behavior myself. Nothing improves until a person is willing to try something to help herself or himself. Tell your sister you won't make any more suggestions of help to her unless she is going to try at least a little bit, at least one thing. And then stick to that. You can be supportive without trying to fix things for her, and if she won't try anything to improve her situation you cannot help her.

My suggestion: Tell your sister that you will be there for her through thick and thin and will help her in any way you can as long as she treats you with respect. But the minute that she behaves badly, aggressively or abusively toward you, you will be out the door. And literally walk out the door when she does that. Don't stick around for it. There's no benefit to you or to her for you to allow her to treat you badly. Don't let it continue.
 

links56

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DX FIBRO
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Fibro affects everyone in different ways and you should take everyone's advice into account and make your own decision. But walking out on the person can really make them feel alone, uncared for, angry, depressed even suicidal. I also agree with what sunkacola is saying also but I think you have to be careful in the beginning. I agree that you don't want to enable the person to keep doing the behaviors they are doing but in the beginning it's an awful lot for the person to comprehend and they do have to hit rock bottom before they will seek help on their own but your teetering on a fine line with your sisters life. When I first started having problems I acted the same way and I was living with my brother just the 2 of us and he didn't believe me or support me he left instead and I was so alone and battled with living everyday for months. I lost my house and everything I owned I also lost my brother and all my friends and family because they chose to walk away. Even though it took me years on my own to cope with it and I finally accepted it and made changes I still have no relationship with any of those people who left me alone including my brother. Since then I've helped many people with fibro and no matter what I'll never forgive my brother for leaving me in my time of need after we'd been through so much together, a very abusive childhood, the loss of our mother at such a young age, and all I did for him before I got fibro for years and he just walked out on me when I didn't even know what I was facing at the time. I just hope you can be there for her in the beginning and try to be understanding if you can't handle the situation just tell her you love her and your going to give her some time to herself but let her know you'll be back in a certain amount of time. Like I said everyone is different every situation is different and every relationship is different so there's no simple answer but I'd hate for the same thing that happened to my brother and I to happen to you and your sister or something worse. Is there anyway you can encourage her to join our forum? Maybe if we could give her some support and let her know she's not alone in the way she's feeling she would treat you better. It's a hard thing to deal with. Also is she on meds? I've been on over 160 different meds for everything from insomnia, depression, anxiety, to bladder spasms, fibro fog and memory loss. I've been to Mayo clinic and went through their fibromyalgia course. Out of all these meds the side effects made things much worse at the time and I treated people worse because of it at times I didn't know who I was even and now years later I only take 3 meds and my kidneys are failing thanks to all those other meds I was on. The next person you talk to will have had success with some of the meds that didn't help me. Just don't forget it's your sisters life your talking about and you have to be aware of the worst case scenario that could occur and you always treat those you love the most the worst. I used to put this show on like I was fine to avoid everyone's negative comments about how I was fine and it was just all in my head then when I got home I was so exhausted and treated my brother poorly because I thought of all people he'd understand but I was wrong and now we don't speak for a decade or more and I'm lucky I'm here today. Hopefully you can figure out how to accomplish both but it might take time before you can get her to make progress and want to get help on her own. I wish you the best.
 
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