Hello everyone, my name is Shelby. I’m 38 and from upstate New York. I am in need of help.

In 2006, I was diagnosed with a case of mononucleosis. While this is a fairly common virus- most never exhibiting any long term symptoms- I never seemed to get better. After years of seeing specialists, I was diagnosed with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). This causes chronic, widespread pain & fatigue that does not improve with rest and many other symptoms that prevent me from functioning to my fullest on a day-to-day basis . I also have scoliosis that is incredibly painful at times and greatly impairs my ability to sleep comfortably.

This is an “invisible illness”, and most would never know how sick I am based off my appearance. Those close to me know that I have been struggling for years & how deeply this has affected me. My spine has an “S” curvature; I take medication 4x daily just to be able to move.

I have seen multiple specialists, most of whom have turned me away because of the difficult diagnosis and the fact there is no cure (including rheumatology, hematology, pain providers). I do see an osteopathic pain specialist on a monthly basis for symptom management; the other pain provider I was seeing told me “ we’ve tried everything”. My primary care physician referred me to another pain clinic in town, however they refused to even see me for a consultation.

While I was able to work for 20 years, my ability to maintain employment has declined rapidly over the past few years. I was employed full time until August 19, 2025. My employer at the time refused to accommodate me in any way; I was provided with FMLA paperwork and was written up on the day I returned the paperwork to my employer, completed by my physician. I had missed too much work due to my chronic illness, and was told I’d be fired the next time I was absent.

I have no way of predicting when a “good day” will be; most days I am bed bound, sleeping 12-16 hours daily. I also have chronic migraines that require close management, and post concussion syndrome due to head trauma sustained due to a domestic violence related assault in 2024. There is never a time when I am not in pain.

I filed for disability on August 20, 2025. I provided the Social Security Administration with over 300 pages of medical documentation, including x-rays/CT scans/MRI of my spine, head and neck. I submitted all paperwork requested, and had both a medical evaluation and a psychiatric evaluation completed. I was denied on December 2, 2025. At that point, I obtained a lawyer to assist me in appealing the denial. Today I received an email from the Social Security Administration stating that I have been denied a second time.

I have had no source of income since August. I have had intermittent help from family so I have a way to feed myself and my dogs, and to keep my home for the time being. I was unable to file for unemployment as it would have interfered with my disability claim. I have applied for every other kind of assistance that is available. I do not have any sort of day-to-day help, and I have three dogs who depend on me. As of right now, the only public assistance I receive is through HEAP. I have lived in my home over a decade and I am now having to come to terms with the fact that I might lose my house, as well as everything else I’ve worked very hard for. The next step is working with my lawyer to request a hearing in front of the judge, however, this can take between 7 and 20 months.

I know that there are a lot of people struggling out there, and if you could help in anyway, I would be greatly appreciative.

Scoliosis curvature (upper):

Scoliosis curvature (lower):