The day I stopped being able to work because of Lyme disease was the same day I also became financially incapacitated.
As if it weren't enough to be constrained by physical limitations; now Lyme was limiting my life's activities because I no longer had an income and hence the freedom to spend money on things I needed, never mind the occasional impulse purchase.
Fortunately, after nearly three agonizing years of peso-pinching, hand-outs and hand-wringing with God, I was awarded SSDI, Social Security Disability Income, but not after a long trial and much waiting. Still, (and while it only covers approximately half of my living expenses), I now have an additional means of paying my bills. And just in time, because after depleting my savings, 401 K, the equity in my condo and wringing every othe source I knew of bone-dry, I didn't know how I was going to manage without an additional source of income.
For many Lyme disease sufferers who can't work, SSDI can provide relief from one of the major burdens of Lyme disease; financial hardship. Following are some tips for obtaining SSDI, and how to keep it once it has been granted to you.
First, in order to qualify for SSDI, you must have worked for a significant amount of time during the ten years leading up to the date of your incapacitation. The amount of income you receive from the Social Security Administration is dependent upon how much you earned during this ten-year period, but is not likely to exceed $1,500, as the government also imposes a maximum benefit, regardless of your past income.
Also, you wil need a physician (and that means someone who is an MD) willing to diagnose you with a malady other than Lyme disease. By itself, Lyme is considered insufficient proof of your inability to work. Depression and Chronic Fatigue Syndrome, however, are accepted as valid diagnoses and since most Lyme disease sufferers also have these symptoms, many choose to cite one or both as the primary causes of incapacitation. Other dysfunctions caused by Lyme may also be acceptable, but the aforementioned are the two that I am aware of.
It is also important that your physician fill out a functional capacity form, which can be downloaded on the Social Security Administration's website: www.socialsecurity.gov
. This form provides an assessment of your ability to perform certain activities, such as walking, standing, sitting, stooping and lifting weights. The goal here is for there to be no activity that you are able to perform for more than a couple of hours at a time and for a certain amount of time each day. The sooner you can get this form filled out by your doctor, the better, since your benefits will be dated beginning the day that your physician declares you to be disabled according to his or her diagnosis and the functional capacity form.
Now, for the unfortunate part of this whole process. The first time you file for SSDI, you will be denied. Most likely. But don't despair, if you file for an appeal once you are rejected, if you find a good lawyer to represent you, and are able to get the support of an MD, then you are likely to win the second time around.
Depending upon the state in which you live, it usually takes a year to eighteen months to receive an initial decision from the SSA, and then another 12-18 months to obtain an appeals date in court. Tack on another 1-9 months from your court date to the time that you will be awarded with a decision, and then several weeks to months after that before you finally get your first paycheck.
Yes, the process is lengthy, and the sooner you get started on it, the better. Don't sit around and hope or assume you will get better. Don't disregard the process because it is cumbersome and time-consuming. You never know where you will be three years from now and that money could come in handy. Trust me, it is worth the struggle.
I filed for SSDI two months after I became ill, even though at that time I didn't know that I had Lyme disease and was sure I'd be healed within a few months. I filed because I had nothing to lose and figured I was better off being safe rather than sorry, as the well-beaten adage goes. I'm glad I did, because I spent the next three years draining my bank accounts, just so that I could pay for my basic living and medical expenses. Had I not pursued SSDI, I might have had to stop my treatments and remain dependent upon the charity of others in order to survive. While I don't like resorting to SSDI for my daily crumbs, I often remind myself that my benefits were well-earned and the result of money that I contributed to the SSA during my working years. It isn't charity; it's money I gave to the government and which I now need. It's my rainy day dough.
Finally, if you are fortunate enough to be a recipient of SSDI, keep in mind that you will be awarded a nine month trial work period after you receive your benefits. This trial work period allows you to work and earn as much income as you wish for up to nine months, if, at any time after you receive SSDI, you decide you are well enough to work again. After that nine month period, any income you receive will be deducted from your montly benefits. So if you receive $1,000 per month, for instance, and earn $500 a month from part-time work, then your benefits will be reduced by $500 each month. This can be a significant disadvantage if you find that your benefits don't cover all of your living expenses (which is most often the case), but you want and are able to work part-time to supplement your income. In this regard, I feel that the SSDI program has failed, because it discourages you from pursuing work until you are able to work full-time again, which is detrimental not only to you but also to the economy. It also encourages underground, or illegal employment, for those who need additional income in order to survive (what soul in the United States can live off of $1,000 per month)? so that you don't lose the benefits you have been given.
Still, SSDI can be an immense help to many who cannot work because of Lyme disease, by providing a significant source of income when others run dry.