Living with Fibromyalgia: The Struggle for Validation

I was just telling my boyfriend that I need to get a cane so that my disability looks real enough to people to take seriously! There are plenty of days I just tell people that I'm too exhausted to justify my own needs, so they can do their own research.

Ya I did something to my hip and I finally went in yesterday to ask for an x ray and a referral to an ortho from the e.r. because I can't even hardly walk. The Dr was so mean to me and did absolutely nothing refused me even an anti inflammatory shot. I'm still really upset about it today. I'm tired of these people getting paid so much to do nothing but gaslight you and treat you like you're less than human and don't know anything.

Ppl that dont have it will never understand my left hand middle finger is starting to bend..its very painful. .

I have fibromyalgia and I had spinal and cervical mris done and those popped for something I thought finally people will take me seriously NOPE

I absolutely know this feeling and have not accepted it. I am still constantly searching for a better doctor and a “better diagnosis” and by better, I mean less stigmatized and more understood. Part of me is feeling like I know there is something wrong with my body and I know there is a good reason and I want a better explanation and more answers seeing as things just seem to be getting worse over time and the only advice I have been given is to eat better, exercise, get sleep, and try yoga. Its not good enough for me. Also, I think fibromyalgia is related and comorbid with many other conditions that I can also relate to. Every test that comes back normal leaves me feeling heartbroken because it feels like the doctor is telling me that nothing is wrong with me and that I’m perfectly healthy and that what is happening to my body is not real nor serious, and sometimes they actually say exactly that. Truth is, I feel we are being diagnosed with fibromyalgia at a time when it is poorly understood, still being researched, and still not widely understood by most practitioners and that leaves me feeling both a little hopeless and a little hopeful that in the future, things could get better. If not in my generation, hopefully for future generations it will be better. All I know is that fibromyalgia is valid, real, and life altering. I personally will not stop searching for better answers though. The tough part is learning how to accept that many people will not believe you. Even with a test result or diagnosis, misunderstanding and disbelief will still occur. All we can do is advocate for ourselves and others like us, seek out people who do understand, validate and accept our own truth, and lean on those who do their best to support and believe us.

Ik exactly what you are going through.. I even had the same thoughts when I was tested for rheumatoid arthritis and lupus and all that other stuff. I was hoping for it to be posative just the same as you. .. it really does suck when people have no idea how this really feels.

I'm so sorry this is happening to you. I sometimes feel the same way. My pain is so bad at times that my muscles just give up and I end up with 0 strength to stand. I tell them, let me see you handle my illness for 1 day, you wouldn't even survive. Let's see whose the one that needs to toughen up? To be honest, I feel that those who suffer from fibromyalgia are tough as nails. Pain level 10 for a regular person is like level 6 for us. Our bodies created a high pain tolerance over the years. They wouldn't even be able to stand in our shoes for a Day much less a few hours. May God bless you and don't worry you're not alone. #fibrowarrior

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I’m sorry you have to go through this. I completely relate to you, I have FM since 2009 and got so used to it, actually becomes part of your life. I don’t let fibromyalgia live my life I chose how to live. So people think I’m faking it or just trying to get attention. A person who work in the medical field ask me if my conditions were real?. I was very offended. I realize that people alway going to speak and assume your pretending. Like seriously who want to pretend to be sick for so long, fool the SSA and doctors, that’s exhausting. My advice F…. Everyone, this is your journey is your body only you know how it feels and function, and only you can judge yourself. F… them. Ignore the comments and be sarcastic it actually shut some people down. Like when I was asked is my condition was real, are you really still sick?? I replied I don’t question your stupidity you can’t see your stupidity just like You can’t see my fibromyalgia.