This is a topic that comes up all too often in my online support group.
We don't look sick on the outside, so we must be fine. Right? Wrong!
Every step I have taken in the last two years has been directly 180 degrees away from filing for disability, even when I couldn't get out of bed to pee or take more pain meds. Mentally, at this point, I just cannot even think about it.
That said, I completely support anyone who is filing because their bodies just cannot take it anymore.
For me, I have to believe that the science of medicine will not fail me. I have made it through years of status migranosis, only to have a six month break, before a car accident took everything away from me. My career, my self esteem, my spark. It was a dark and scary place. I couldn't LET the pain win, but what I was really doing was not allowing myself to heal. I would cry the whole way home, every night from work because driving was excruciating. Had shoulder reconstruction, which only fixed 10% of the problem (an impingement) and was left with scar tissue surrounding a nerve plexus. At which point I was told, this was as good as it gets. We cannot help you any further. Even though I knew better, I believed them. So I quietly suffered for a few years, I was tired of fighting for recognition that I was in excruciating pain. Finally, I was suffering from a flare in my neck that I couldn't manage on my own and sought help from my PCP. This led to spine specialists and pain management. The spine doc told me that he couldn't do much, so here is an Rx for Neurontin. By dose three I was in the ER for anaphylaxis. 22 hours later, after the rescue meds wore off I was back in the ER via ambulance. After which I was written off by the Spine Doc who sent me to a chronic pain program. Who, while they successfully treated the nerve pain, refused to fully evaluate my musculoskeletal issues. No one in this hospital system would treat me because of the doctor who had been in charge of my care at the program. Apparently, he has a bit of a God complex, despite being a Psychiatrist who specialized in Chronic Pain and gets pissy when others treat his patients.
So another year went by and I finally switched hospital systems and sought treatment with a physical medicine doctor. First thing I told him was, I don't want narcotics. I want to be evaluated, something is wrong. He agreed. I started Physical Therapy that focused on pain management and breaking up the scar tissue that was the root of the issue and had left me with Myofascial Syndrome. I was also referred to an osteopath. A year ago, the osteopath had just finished a session (this man is a miracle worker who needs to be cloned) on my spine. He said, something isn't right, you should be feeling better. We discussed my symptoms: Weight gain, Horrid Fatigue, Vague flu-like episodes, fevers, diffuse joint pain. It had all come on gradually, while I'd been dealing with another slice of hell. It had gotten to the point where I couldn't tell you where one pain ended and another began. I was at the bottom of a cauldron full of dark black goo.
He decided that I needed to be screened for autoimmune diseases. My Sed Rate was 58, my CRP was 1.5, but my RF was only 8 and ANA, etc were negative. He told me, your case isn't clear cut, but you need to see a rheumatologist. You won't get better overnight, but there have been so many advances in rheumatologic medicine, you can be treated.
Three doctors later, I have a vague diagnosis and am in my second week of a chemotherapeutic drug called Methotrexate.
While most days I don't feel great and it is really hard to remember that I AM better than I was a year ago. I can walk. My morning stiffness only lasts 1.5 to 2 hours vs 3 to 4. I only need a 1 hour nap per day. Where before I could sleep 3 or 4 hours in the afternoon and still head to bed that night.
I still don't sleep through the night, pain wakes me up, but it IS better than it had been.
All of this came to mind after reading this article: When You're Not Sick Enough on But You Don't Look Sick
Someone in the comments section recommended the link below. I recalled, from some of my darker times over a year a go, perusing this website. Most Disability cases get refused the first time, especially when the person is filing without legal assistance.