Living With Fibromyalgia - Online Support Group

Disability journey

So I wanted to share with you all a victory ! I was given a fully favorable decision that went under review by the appeals council, a second disability hearing was called - I won a second time fully favorable decision. I received my back pay and now get monthly benefits. This came with a huge cost to my physical and mental health ! It caused my severe depression to include self harming and needing therapy more frequently. I was subjected to a social security psychologist showing me a video of a quadriplegic individual who had overcome his disability and went on to become an motivational speaker. I was told that I had no business filing if someone who had issues worse than mine could make such a good future for themselves. It made me feel shame over things I had no control over. I was unjustly scrutinized by each agent that I spoke to when inquiring about my interim benefits status. I was unfairly judged by these individuals even after receiving a favorable decision. I contacted my local congressman who decided to help me and my attorney get the facts of the case reviewed at the highest level. I started to receive the interim benefits and then got another court date to have the case reheard . I received the second favorable decision and receive benefits now . My case started in August of 2018. If anyone needs advice or help with this process I urge you to exhaust all of your resources and not stop fighting. I’m still working on the depression and getting my dignity back but I had to remind myself I was worth the fight . :purple_heart:


I am SO happy for you!! Disability is getting harder and harder to get! When I applied in 1996, I was approved my first try. But, someone I know actually had theirs taken away according to his wife. I have a feeling it’s because she didn’t keep up with doctor appointments which is very important. Again, so happy for you!!!

1 Like

Thanks ! I appreciate you taking the time to acknowledge a difficult process. Love all your post and fun outlook on life ! Can’t wait to share some poems with you all soon . I need to have them copyrighted first . Therapy poetry/ writing has helped my soul . I hope to share it to help someone one else like you do with the humorous jokes ! Hugs Joy


Glad to hear you finally got your disability insurance! I am in the process, so I am not looking forward to this or what lies ahead. I have fibromyalgia and several other issues, from a cervical disc fusion and arthritis, neuropathy, etc. When a friend of mine was trying to get her disability because of her severe disability, she had to go to court and the doctor said she was obese and she only weighed 135 pounds! I have heard it’s not easy and that it can take a few years or more for the whole process. I did retain a lawyer and hope that it helps. I know that all of this is hard on our mental state, to say the least, so we all need to keep pushing for what we deserve and just remember that they don’t want to give you the money that you worked so hard for all of your life, and that is why they make it so hard to get it. But we must keep on it and not give up! Thanks for your post!

1 Like

You are so welcome-it was definitely meant as encouragement to everyone on this platform looking to file for disability. In my case documentation from the doctors, confirmation from Mayo’s. Clinic and the residual function capacity ( RFC) form filled out by my Rheumtologist were all contributing factors to a favorable decision. Make sure your medical evidence is there , the judge is more inclined to listen to your health care team than that of their own professionals that work for the social security office that are trying to disprove your case & not confirm your evidence. Good luck to you ! Sincerely, Joy

I have a book full of poetry and just thougths that don’t rhyme. I believe they are called “pros” or something of that sort. My English teacher in college read them and told me I should get them published but I don’t think they are even close to being good enough! Writing has always been one of my favorite things to do. I don’t text, I don’t even use my cell phone except for if I should need to make an emergency call. I am old fashion and send lots of greeting cards and still have a landline so I can talk with people.

When I applied for disability, I filled out all of the paper work, had letters from doctors and also had family and friends submit letters on what they see that I can and cannot do and how the health issues I have effect my life and keep me from not being able to do a lot of things. Get a good disability lawyer and a doctor who has faith in you. Those things are very important! Keep us updated!!

Congratulations, Jse123! You fought a long hard fight and won! :blue_heart: :blue_heart: :blue_heart: :blue_heart: :blue_heart:


Congratulations! I remember how difficult that process was. Mine was in the 90’s when fibro was very much considered just an excuse. You’re right; they treat you like a scammer and do everything to try to shame you for applying at all. Little did they know that I cried for weeks when I was told I had no choice but to stop working. I ignored calls from coworkers and patients because it was too painful to talk to them. I remember reading Women Leaving the Workplace to try to get my mind in the right place. It took quite a while, but I realized there was a reason that all this mess was allowed in my life.
You will no longer have to go through all that mess! Yay! Don’t panic when you get those ‘review’ questionnaires, which come every year or so. Complete them and send them certified or registered (I can’t remember which one it is- the one they have to sign when received.) They’re very short and only take a few minutes to complete. I send them this way because I had a year that they said I didn’t complete the form. Fixed that!
Congrats again! You’re going to see a gradual improvement. It’s amazing how your emotional well being affects your physical well being. I’m so glad you’re determined! You’re going to do well!

Hi Grammy bear ,I love greeting cards - prefer “ snail mail “ - slower postal service.than email. Lol miss going to the hallmark shop many have closed . I believe it’s a nice thing to get something in your mailbox other than bills . Especially When you are home bound like many chronic illness patients .also I did receive my benefits, sorry if my post was confusing. It was just a longer process bc of the appeals counsel reviewing and remanding it for retrial after the first favorable decision. The second time around it went through.

Thanks , I’m a huge supporter of anyone going the the process if anyone ever needs support or advice. Thanks for your positive message.

THANKS for your thoughts and kind words and the heads up on what to expect during a review. We have to advocate for ourselves but also one another “ invisible chronic illness “ is hard to understand since we look fine it is hard for anyone to understand the pain fatigue ect unless you experience it . If there’s any questions I can answer for anyone else I’m here for the group :purple_heart:

I too have fibro and other health issues. I am receiving disability since 2010. When you spoke of the shaming of them showing you a video of the quadriplegic who is a motivational speaker, I can relate. So glad that you got the disability and back pay. I know what living with fibro is like. Some days I am in so much pain I want to die. Then on my good days, I feel guilt for not working. However, how can I hold down a job when I would need to be home sick with pain and physically not able to handle the work load when I am at work. Even as a motivational speaker! I couldn’t do that. I’m not an intelligent speaker. I do not have those abilities. Plus, disability payments are barely enough to live on. Then to have shame and guilt trips piled on top of everything else. I was so glad to hear your trials concerning the disability because I have gone through the same thing. Thank you for sharing. (Not that I am glad it happened to you, but that I went through similar things and it’s good to know we are not alone.)

1 Like

Thank you for your time to post and the valuable info. I hope to become an advocate at some point for chronic fatigue ,depression ,and fibromyalgia sufferers . I was saved by the congressman’s office because they really got my case on track , they can not influence a decision but they can help when the social security department fails to quickly address issues . In my situation I also had a favorable decision that went under review before I received my 1st check . Social security had sent a letter stating they were going to pay interim benefits before the next hearing. I did not receive any of those payments until congressman Lahood got involved. I’m grateful beyond measure for those folks at his office. I know I’m also very blessed to have the second hearing decision to be favorable as well. I think we deserve to be treated with respect like anyone else who has a disability . :wink:

1 Like