How do you "deal" with people in your life who doesn't believe in fibro?

[dancingwithfibro]

so i had a doctor say that she didn't believe in fibromyalgia before and it was clear to me what to do - not to ever see her again. but i never had a friend say that. and it was only after i point blank asked her about it because i had a nagging feeling she didn't like talking about my illness. she would always listen if i brought it up, but she never asked questions and i wasn't sure if it was simply disinterest or disbelief or something else. so i asked her one night after some wine and building up the courage and she said that she's not sure. she's a registered nurse and apparently she works with a lot of doctors who don't believe in this diagnosis, that it's just a label that you give someone after all other tests come out negative for chronic pain. and i tried so hard to be ok with what she said.. everyone is entitled to their own opinion and i respect and appreciate her honesty but it still stings. it still hurts. she says that she believes that i am experiencing the symptoms but it still doesn't explain why she never asks me questions about it. she asks me about my spine health, but never fibro. my gut tells me she's not telling me 100% truth about how she feels about it.

i think writing this out just made me realize where i stand on it. but wanted to hear others experience in this. i feel like at the end of the day, we have so very little energy and even smaller to deal with bs, and keeping our spirits up is so very important there just isn't room for friends and family who aren't supportive and curious about this illness. harsh?

 

[DK_engineer]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

This is just my opinion, but I don't think you are being harsh. I think you are seeing a conflict between what she says and what she does - as your friend she believes you are experiencing debilitating pain and other symptoms, but as a medical professional she doesn't believe the diagnosis you were given is valid, so her response is... to do and say nothing? To ignore the problem? That makes no sense. I would think she want to figure out what is "really" wrong so your pain could be treated.

My guess (which may be wildly inaccurate) is that the doctors she's around are not very charitable in how they talk about fibromyalgia patients behind the scenes. She may be avoiding talking to you about it because she is trying to to compartmentalize the two worlds to avoid conflict.

Would she be open to reading a book written by a doctor who does fibromyalgia research? It's called Breaking through the Fibro Fog by Kevin P White. (I know I keep bringing it up; I just thought it was really interesting). One of the many points he makes is that while the fibromyalgia diagnosis is far from perfect, critics hold fibromyalgia to a much higher standard than any other condition. The example he uses for comparison is lupus.

I'm sorry you are going through this with your friend. Losing (or losing trust in) a friendship can be so deeply painful. I have a few friends that I don't associate with any more and a few that I once trusted but now keep at arm's length. It makes me very grateful for the friends who have been rocks.

 

[diamond]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

I understand your feelings it does hurt so much when you are suffering so much and there is this air of disbelief from the people we want to accept and believe us.

I think because we know so many people including many medical professionals think we are exaggerating or that fibro is all in our heads...we have depression etc we desperately want validation from our friends and family...not fuss not pity just to be really believed.

There is no doubt that causes problems in so many of our relationships...i have explained to a friend or family member how i am sometimes ....severe pain or can't get up..... and then next day i might speak to them and they say 'oh wasn't it a lovely day yesterday did you go out ' ?

I feel like i may as well have said nothing and in the end that's what i do. Long term the fact is most people don't want to hear about all our aches pains and problems.

That's hard for us because often our pain consumes and governs are whole lives.

DK's post is probably spot on with your friend...maybe she isn't sure abut fibro because she is surrounded by docs who don't believe in it.

If she is a good friend and you enjoy her company in lots of other ways maybe when the sting starts to fade from your raw emotions over this just accept her limitations and build on the bits of companionship etc you get from spending time together.

You're not harsh this illness is so horrible we just want our friends to 'get us'.

 

[WarriorPrincess]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

@dancingwithfibro It's good that writing it out helped clarify how you feel on the subject. I often do that, because getting things out of my head and onto paper (or my tablet or desktop) can help solidify how I really feel about a subject.

I already have an opinion, just from reading your post. I've been dealing with chronic conditions since birth, yet my family still doesn't believe in disabilities or being disabled. My disabilities (Fibromyalgia and other physical issues) are hidden, although if someone spends an hour or more with me, at least one of them usually becomes apparent.

I used to make excuses for people, but that was before society changed. It became more acceptable to talk about disabilities, and I realized that I shouldn't have to hide my medical conditions as weaknesses, and that I deserve respect. I've grown tired of putting up with bad behavior from people.

I'm a very caring individual, and will go out of my way for strangers, let alone those I care about, and I'd decided if they can't at least show a little care and concern now and then, I no longer need them in my life. As you know, negativity takes a toll on us both mentally and physically, so these days, I try to focus on the positive, and limit my exposure to those who by disbelieving, force me to defend myself and my health concerns.

I'm sure you'll make the best decision for your situation. It's difficult to let go of people we've known for years, especially when we care about them, but if the association ends up having a negative impact on your life, you'll know what to do.

 

[gryfalcon]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

In another topic, I posted about the stages of grief. Everyone, the patient, the family, friends, and everyone you encounter from doctors, employers and school officials, go through them, too, when they encounter your illness (or your child's).

Denial is the first stage. Doubting that you have the disease.
Bargaining is the second. Endless schemes for making things go back to the way they were.
Anger is the third. Blaming the patient, or caregivers, is the next stage. Accusing them of malingering. Accusing them of being hypochondriacs, of catastrophising, of being lazy, of being pill poppers. Blame the patient for his illness.
...and then there is grief and acceptance.

Most people that I deal with, regarding my daughter's illness, are at some point in the first three stages. Only the closest friends and family members get to acceptance, or that rare person you meet who has lived with it, themselves, for some reason. Even most doctors are in one of the first three stages, which is what makes this so hard. Your friend appears to be at the first stage -- Denial, or even the third stage - Anger. Some people never make it past that. The question I would ask myself is whether I see a friend actively trying to work through those stages, or someone who is just stuck there, not making much effort to move on. The next question I would ask myself is where I am in my own life. Because I have myself or my child to think of first, and there is a limit to how much stress I can subject myself to (in being doubted or blamed), or how much time or energy I can devote to trying to help a friend or family member catch up and get with the program. There is definitely a point at which I realize that the trust and respect is not there, and I have to move on. I just can't stay in a relationship where there is not trust and respect. I am saying this from experience.

I did have one very close family member who was making disparaging remarks to my child doubting her illness, pretending it was a joke, and I finally told him that if he had any questions or concerns, he needed to come to me, but not to make comments like that to my child, again. I fired a doctor who couldn't get with the program, and took my child out of a school that couldn't get with the program. This is hard enough without people who are supposed to be helping, making it harder for us, instead. If a "friend" does that to me, then I reevaluate how much time and energy I have to subject myself to being doubted and blamed, when I have very important things and people to devote my time and energy to. (hint -- very little or none.)

I hope this works out for you.

 

[Eyesup]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

Ahh, dancingwithfibro, I'm so sorry. I don't know why they named this disease "fibromyalgia" it should have been more like steelyourlife or stumpedthedoctors.
Friendship is often another casualty of fibromyalgia. DK sounds spot on in her analysts. I'm not sure why, if they believe your pain and other symptoms what do they call it? Fibromyalgia is the name the medical community gave it (truth be told most of them named it "trash can"), we didn't name it.
you must decide if this friendship is worth fighting for or has your life changed/evolved to a place that makes it toxic instead of therapeutic.
Im not sure if this is about her caring about your illness or if it's more about you suspect she thinks youre making it up. I personally don't like talking about it with people that don't understand what I'm really going through, but if I felt like they thought I was lying...I would be deeply hurt.
Everyone has given some great input. we are all here to help you through weather you decide to fight for it or if you let it go. We've got a shoulder for you. ; )

 

[dancingwithfibro]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

you guys are amazing. thank you for your wise advice, compassionate support, and just friggin getting it. you guys made me feel incredibly better about the situation and reminded me i am not alone in this.

dk - yes, exactly! then why doesn't she say anything, ask questions, and try to figure out what it could be? and you ask another defining question, would she make the effort to read a book about it if i asked? honestly, i think she just doesn't care enough to (ugh, defining). BUT you've convinced ME to read it now! lol i like that it talks about fibromyalgia not being a perfect diagnosis and critics hold it to a much higher standard. fascinating.

like so many of you said, we have a very low threshold for the negative people in our lives, or non-supportive friends and family. it's already way too hard to live with chronic pain and fatigue, there's just no room for me to prove my symptoms and/or diagnosis.

 

[Eyesup]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

Fibro fog has got nothing on yo girl!!! ; )

 

[Trellum]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

To be honest I try not to think about it, but I can imagine how painful it can be for you to know your friend doesn't believe you. You will have to get over that feeling though, I know it's hard, but you can't change her mind and shouldn't try to do so. I think that as long as she doesn't try to impose what she thinks about fibro all is good. It's great she is respectful in that sense... sadly we can't write some sort of scripts for the people in our lives. I wish we could sometimes, lol, sometimes is what they don't say to us what stings the most.

 

[WarriorPrincess]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

I looked around to see if my local library (or the extended system) had the book Fibro Fog by Kevin P White, as mentioned above by DK, but of course they don't. The people who do the purchasing probably don't believe in Fibromyalgia, either. Oh well. Hopefully at some point, I can purchase it.

I don't bother to talk about my health with most people in my real life, although I do belong to a few online support groups, which is where I derive most of my support. It's sad that people who've known us our whole lives, or who have worked with us or spent time around us, would actually think it's acceptable to denigrate and doubt us, but as far as I'm concerned that is on them, not on us. If most of them spent a month in our shoes, they'd be begging for mercy.

 

[marcus777]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

Hello,

Your friend might not ask you questions about FM because after working all day with illness she might prefer talking about non medical topics.

I relate to both sides.
If she's saying it in the sense that it's an unknown illness whose mechanisms is unknown she has a point (vs diabetes).

But it is hard when people say: you don't have FM, or that they don't believe I have those symptoms, or don't believe that I'm limited in my activities die to my FM or that I can't get things done.

On the other hand your friend said she believes you have those symptoms.

FM the disease is so unclear but like others said we have to call it something.
Our muscles and connective tissues are sore after all and that is what FM is.
So tell you friend, I have to call it something... and that is what my rheumatologist said it was.


I hope you can path things up with your friend because this illness is so isolating.

 

[oportosanto]

Re: How do you "deal" with people in your life who doesn't believe in fibro?

I think we all should respect each others, so if someone doesn't believe they should keep that to themselves.