Social Security Disability is not a process to be taken lightly. Many of us with CFS, Fibromyalgia, IC Disease or a combination of the three have found it necessary to go to these extreme measures for financial survival. It is a decision that I, as well as many others, had to let go of our egos and admit that we were too sick to try and support our families in the traditional sense and succumb to the lengthy process to which we paid into for years.
The disability process itself is long and exhausting and until you get through all of the paperwork, doctor’s notes, lawyer chats and Administrative Law Judges, you feel as if you have went through the biggest inquisition of your life. Every piece of your medical history for at least the past 5 years is uncovered and every detail of your life is basically examined under a microscope.
If you are fortunate, as I was, to get an ALJ who is sympathetic and believes in ME/CFS, Fibromyalgia and Interstitial Cystitis and he/she finds you to be a “credible” witness and your medical information all checks out, the nightmare should end with their decision. Or that’s what I thought anyway.
I have found that ever since I went on disability it has proven to be a hindrance in every aspect of my life – especially over the past 1 1/2 months. Don’t get me wrong – I am forever grateful that I am able to receive my benefits because there is no way in hell that I could work 40-hours a week. I’m slowly trying to get my body built back up so that I can achieve what the SSA considers “substantial gainful employment”, but I still have a really long way to go and I don’t know if I will ever get there. But the thing that is important to me is that I keep trying. I think now more than ever with the state of the U.S.’s financial situation, things are going to get harder and harder and programs like disability can’t be depended on for forever. We’re hearing all of the time now about how bad the Social Security’s financial situation is.
The last 1 1/2 months has been extremely difficult trying to deal with all of this financial crap since my husband lost his job. Working hard to get on Medicare and to find my prescription drug coverage was very difficult. The process should have been a fairly simple one but I had to have a lot of my medications changed and had to do a lot of research in order to make sure I don’t fall into the donut hole. I’m still not sure that won’t happen and before the end of the year I could likely have to pay a lot more for medication than I should have to for someone my age.
Now this week my disability has proven to be another hindrance in our financial life. We have been working on getting our home refinanced at an extremely lower interest rate and because I am on disability, I have had to jump through all kinds of hoops for the bank. My husband and I are used to walking into the bank and getting whatever money we need, anytime we need it with very few questions asked. Our financial history has an excellent proven track record but apparently when you are receiving disaiblity, all of that goes out the window. I told the bank I felt extremely offended that we had to go to all of these lengths and that it wreaks of discrimination.
I have been receiving my benefits since 2006, but the bank needed proof that my disability is “permanent” and that I would be receiving benefits for at least the next three years. I asked them if they require all applicants to have their employers provide proof that they will have their current job forever or for three years. Naturally, they said that an employer is not going to provide that type of documentation. So why would Social Security? As I mentioned above, anything can happen over the years with the Social Security program and the SSA is not going to put in writing a long-term commitment like that, even though the benefits are meant to be permanent.
It has been a nightmare and finally, they said they would be satistifed with my awards letter from the ALJ that states what my illnesses are and how he came to his findings. Because the paperwork specifically says that it is medically proven that I can’t work 5 days a week, 8 hours a day due to my illnesses, that should be enough evidence to get the processing completed. This was after I had submitted my tax forms from the SSA, my determination letters stating my monthly benefits and when I would receive them each month and everything else that proves that I am and have been on disability.
It’s like I have to prove over and over again that I am sick. It’s degrading, humilitating and frustrating and it’s not right.
That is precisely why I have not filed for Disability in all the years I’ve suffered with this illness. I left my full time job in 2000 and became self employed. I was lucky enough to find something in my field that allowed me to work my own hours, make my own appointments, etc. If God had not blessed me in this way, I would be financially broke. My husband has been blessed with a great job as well but in this economy, no job is safe. I can’t work at all some days due to profound fatigue and extreme Fibro pain. I’ve had to schedule all my work for afternoons as most of my mornings, it takes me until 11am to feel somewhat human. Thank God I can do that. I have 3 more years until early retirement and believe you me, if SS is still around, I’m filing for it. I will still have to do something part time to help with any additional bills.
It’s sad that we have nothing in our system that looks out for folks like us who fall through the cracks. When you are able to win the battle, you still have to fight to keep your benefits. That puts a lot of stress on an already overstressed body. I’m not sure if I can deal with any more stress right now and why I will keep on trudging through the foggy days and painful nights until I am legally able to get early retirement without a fight.
I can totally relate. I have been on Social Security Disability since 92/93 and had the same kind of issues you are experiencing. It wasn’t until the Soc. Sec Dept mistakenly cut of my benefits overnight and I asked for an emergency hearing before a Judge that I finally got a “permanent” status.
Now I no longer have to be reviewed every other year or so, and I don’t have to deal with the lending issue, either.
As for the medication and all that, it is a toataly nightmare.
I tried to return to work under the return-to-work program and was told (by the business I worked for) that I couldn’t be working and have Medicaid, so I cancelled it. I have never been able to get back on it since. And if by some miracle I could, it would cost so much is would be cost prohibitive (I would have to pay an increase fee every month which is a penalty for dropping it in the first place. The fee goes up every year I was without Medicaid).
So…I have stayed with the VA which is so much worse.
I’m sorry you are having so many struggles and will be keeping the job situation and your house situation in my prayers. I hope all of that works out and soon.