Fibro-Stigma-Family

Hello,
I've been wanting to write about this for so long.

I was diagnosed with bipolar, and I got used to that. Since I have been diagnosed with fibro, 98% of my family look at me as if it's a hoax. And it got even worse when I was put on disability. I tried working and it failed every time, so this is why I have this status. In family reunions, in phone conversations, someone will have to mention things like : Well x could not make it, he's working today. Yes... Some people have to work.... Well, you know, life is not always easy, but some people still go to work, that's the way to go, everyone does that... It's like an obsession, they have to remind me that I am not working. Or when they see me, they ask: Have you looked for a job lately? You should get a full time job, it will all go away... (The pain). There must be something you could do? Their best suggestion: Beneficiary attendant... My family, even if I don't see them too often, all they say and think, sticks in my head, and my self-esteem goes down the drain. Like if it's not enough that I see the world around me, I don't need my family to remind me that the life I used to have : Full-time job, car, horse, lots of friends and a social life... is not there anymore. I have to look at what's left... A big contrast.

(((((((((( Quebec01 ))))))))))))

I'm sorry you are struggling with family and their uneducated ideas about Fibro. Family can be the worst when it comes to their assumptions and lack of support. They can be very hurtful at times.

I finally had to give up working because of my fibro. The line of work I did was very stressful and physical at times and I just could not do it anymore. I still deal with the feelings of not being a productive member of society, not being able to support myself as I always had done and feeling as though I'm lazy and imagining this pain and fog I'm in is worse than it is. I think we can be our own worst enemies at times and to have unsupportive family feed into that, well, it certainly does us no good. Then, I have to come back to reality and accept that I didn't do this to me, it happened, I can only deal with it the best way I can and I have to stop beating myself up over it.

I wish I had some good solutions for you, unfortunately I don't. Just know that I understand what you are saying and I hope you can find a way to tune out those hurtful comments in the future.

Take good care of yourself!

Thank you so much for your response. I just came back from a walk, and I was crying on my way back, and still am. It comforts me to know that you have gone through the same path as me. I agree with what you wrote. My mental health intervenant (like a social worker) told me that sometimes we expect too much and that we should lower our standards. I was considered an achiever... So you know all about the struggling. There are many of us like this. I've been told that we have to go through a grieving process. I seem to be stubborn. My memory keeps bringing back "the old me", and I just don't know when I will be done with that. Yes, indeed I feel like I'm not part of this society anymore. My friends, except one, don't have anytime for me. That came gradually, but it is a fact. I see it more clearly, that if I don't call them, they can be 6 to 8 months without calling me. I don't blame them since not much is going on in my life, it might not be so interesting for them. On the other hand, anyone I meet and speak to, always say that they enjoy speaking with me and find that I'm outgoing and friendly. I'm fluent in cat language. I recently read that the only ones who would not let me down are God, and my soul. So I have long conversations with these two. I ask them questions, as to what they expect of me in the future, and if they could free me from this. I'm still waiting for answers, hints and looking for any sign, if there are any.

Many thanks for your support. I'm here for others too, since that works both ways.

I'm a bit taken back by the "lower our standards" comment that your mental health worker stated. I would rather think of it as being more in tune with what we are capable of doing now as opposed to the past. I think there is a difference between "lowering our standards" to being honest with ourselves and accepting our limitations. It's a hard process though and I'm still working on it.

I agree with you, there is definitely a grieving process that we go through. It can be long and hard, no? I try to remember that what I could do before was meant to be and what I'm going through now is also meant to be. I think there are lessons in everything we go through and I try to remain as open minded as I can to what lesson I'm to be learning from this. Maybe the lesson is to slow down and take better care of ourselves. Maybe the lesson is to stop being so critical of ourselves, learning to be more accepting of our abilities we have now as compared to our past. I'm sure for each of us, the lesson can and is different.

Long conversations with God and your soul are awesome! Remember though that in waiting for your answers, you must keep your mind as open as possible to hear what they may be. Also, don't forget that God answers in his time, not ours, and sometimes we just have to wait, having faith that the answers will come at exactly the right time.

Quebec01, I have fibro, and am now on disability because of it and mental illness. I am trying to learn to focus on what I can do and ignore what I can't. If I didn't, then I would keep the Kleenex company in business with all my crying.

I am sorry your relatives don't understand. (Too bad we can't pick them, but just get "stuck" with them!)

I encourage you to see if there are other folks around you who can be supportive. Is there a fibro support group near where you live? My BFF also has fibro, so I have a special person--as well as the folks here, such as sabby,---who understands.

Dear Travelinglady,
I like your humour... Well, there is an association in Montréal. I'll have to see about that. It feels great to know that PschCentral is there, and all the great members, like you! So focusing more on what i can still do... I notice, with what you and Sabby are saying, I need to change my way of seeing things. I have a tendency to compare myself to others and I always had high standards. That dates back to childhood. I'll work on that, and be more flexible towards myself. That will take off some pressure. It will for sure.
Thank you for these words.
This support is precious.
Hugs

I understand how you feel. I have fibromyalgia, and it sucks. But you can't let them bring you down. It's hard enough to keep our spirits up without listening to negative nellie's! Look, they probably only know what they heard when fibromyalgia was first discovered, and doctors used it as a dumping ground for everything and anything that they couldn't put a name to. Maybe it's time for you to update their education. Nicely Just explain to them that you understand how they feel, and that nobody feels that way more than you. If you could, you would be out there, grabbing that life you used to have by the horns. Because you miss it dearly. And you think about it every minute of every day. And what you need most right now is there support, not put me down. And if you choose to say this, you can, you can add, if you can't support me, then maybe I need to just have people in my life that will. But that's up to you. And you could also write them a letter and print out information on fibromyalgia and include it with your letter. Hope I helped you some. I know you're in real pain.

The same stigma applies to those of us with chronic migraine.

Thanks for sharing this with me. It's very good advice. It all makes a lot of sense. It's true that I am remimded everyday of what my life used to be before and what reality is right now. It hurts to have people remind me of that. Actually, I will follow your advice and try explaining it this way (written information) and see how it works. When I speak, it's like if they don't hear what I am saying because they always ask the same questions every time, over and over. It takes away the bit of energy that I have left and then I feel so empty. Things should not have to be so complicated. Like you wrote, all I need is support or maybe just respect, they don't need to understand, really, they don't because a lot of us don't know why all of this happens, not even doctors.

Many thanks and bless you.

So sorry to hear that you are going through that also. At least we have this forum where we can support eash other. It may not take away the pain, but it soothes the heart...