“DISABLED” I hate that word, but it also confuses the hell out of me! What constitutes being disabled?! What is the exact definition of “disabled?!” It depends on where you look and who you ask! 

OED definition: (Of a person) having a physical or mental condition that limits their movements, senses, or activities.

Merriam-Webster definition: A condition (such as an illness or injury) that damages or limits a person’s physical or mental abilities. Limitation in the ability to pursue an occupation because of a physical or mental impairment.

ADA definition: A person who has a physical or mental impairment that substantially limits one or more major life activity.

SSDI definition: to meet our definition of disability, you must not be able to engage in any substantial gainful activity because of a medically-determinable physical or mental impairment that is expected to result in death, or that has lasted or is expected to last for a continuous period of at least 12 months.

I have a letter from my pain management doctor stating that his evaluation of my condition(s) shows inability to perform any gainful activity for the length of at least 12 months, most likely permanently. But the burden of proof ultimately rests on me and my “testimony” to just how “disabled” I am. People deciding my fate don’t see the pain, vomiting, vertigo, loss of vision, stumbling, staggering, tics, weakness of limbs, inability to make a fist, to hold objects without dropping them, to complete a conversation that is understood by the other party, my loss of words, use of inappropriate words, my side effects from my meds, etc. They don’t live with me and they don’t see my daily struggle just to take a shower or get dressed without agony or breaking down in tears.

I have sent the letter from my pain doctor, along with all of my medical records to SSI. These records include diagnoses of Chronic Daily Migraine, Intractable Headache, Fibromyalgia, Rheumatoid Arthritis, Depression, Generalized Anxiety Disorder, and Panic Disorder. These records are from my Psychiatrist, Psychologist, Pain Management Specialist, Rheumatologist, Neurologist, Headache Specialist, and GP.

Since first filing for Benefits in 2011, I have been denied, I appealed and was denied again, and finally hired a lawyer. I am in month number 9 of an approximate 12-18 month waiting period for an Appeal Hearing in front of a judge to determine if  I am eligible for Benefits.

These almost 4 years of waiting have resulted in my losing my apartment and moving in with my Mother, selling my car, depleting my retirement account and all of my savings that I’d worked to earn for the last 30+ years. I’ve had no income at all since January 2012. I’m not eligible for Medicaid or any state or government assistance until my SSDI is approved. My medical insurance,  which I couldn’t live without, is almost $500.00 per month. My deductible is $750.00 and my co-insurance is 30%. My prescriptions are tiered and range from $15.00 to $400.00 per month for each of usually 7 or 8 of them.

Why should I, or anyone in a similar situation, have to try to deal with this, in addition to already being too sick to work, or even get out of bed some days?! I worked hard and steadily for 30+ years to save for my retirement. It’s all gone! Why must I fight a system that I put money into my entire working life to get back what I’m owed in my time of need?! The added stress of this long, drawn-out fight may well put me in the hospital, as my medical and emotional well-being is severely compromised.

My conditions are all exacerbated by stress, and not knowing if I can pay for my insurance or for my next prescription, is not conducive to healing or stress relief.

I have always considered myself a strong, independent, self-sufficient woman, and now, having to rely on others and practically beg for every dollar I get is demeaning, embarrassing, and enough to make me consider ending the fight and myself. I’m not at that point yet, but seeing my future, my fate, resting in the hands of people who don’t know me, don’t have any reason to care about me, and don’t see my struggles on a daily basis scares the living hell out of me!

I’m not that strong, independent, self-sufficient woman anymore. I’m always in pain, I’m basically homebound, I rely on prescription drugs to make it through the day, I don’t have friends (they couldn’t handle the “new me!”) I go out when I must in dark glasses and a hat covering my face and nose to avoid light, noise, and smells that usually drive me back into my home in tears of pain, frustration, and defeat. I used to travel, visit museums, dream about my future…. Not anymore. I fear my future, and depending on the outcome of my hearing, may not have one.

I was a good person, always putting others before myself, helping those in need, compassionate, empathetic, and caring. I don’t know who I am now. It’s a life of darkness, fear, and pain, and I pray for a way out! I miss my life! I miss the me I used to be, and I hope I can find her again someday soon!