I have debated as to whether I should write this post, because this can be a depressing issue but I think it needs to be addressed…
Fasten your seat belt. I doubt that this will be an uplifting discussion for many out there. I know it is the single most difficult thing in my life at this time and keep in mind that I have a chronic, incurable disease and two 18 year old sons who have spun out of control. Soooo, to say that MONEY is my greatest issue?? That’s saying something!
I was diagnosed with a progressive, incurable, crippling, debilitating disease at the tender age of 20. Yes, rheumatoid disease. (It has since morphed into several other maladies as well). I was informed of all the ins and outs of disease progression and the many pitfalls/side effects of the medications prescribed to try to slow the demon down. I was sent to a psychiatrist to address emotional issues that understandably come with the devastating news. But… there was one thing that wasn’t mentioned. MONEY. How would I support myself for THE-REST-OF-MY-LIFE?
Here I am 38 years later. I’ve been able to work over the course of my disease. I taught first grade, taught seriously ill children who were not able to attend school, I worked with physically and mentally handicapped children, I even owned a gym and became a personal trainer during a long remission. My disease slowly progressed. None of my jobs allowed me to save money and quite frankly, it never dawned on me that the day would come when I wasn’t able to work. My disease took off after delivering my healthy twin boys and the death of my father when the boys were only one. I knew I had limitations from my disease so I chose to be a mother to my sons rather than work and have nothing left to offer them. We lived with my mother and I raised my two boys.
Fast forward 18 years. My sons are raised. I don’t regret applying what precious health and energy I had to be with my boys and involved in their upbringing. Just as my boys grew in those 18 years, my disease grew too. I had no work history for 18 years. In our society, raising your children and being a mother do not qualify as work. Now I find myself unable to hold a job. I am alone and broke.
I applied for disability and am receiving it but it is a pittance if you don’t have the required “quarters” of work over the past 10 years. You cannot live on disability. Not if you enjoy electricity, transportation and food. Fortunately, my house is paid for or I would be on the streets. I wonder/worry about others who are not as fortunate as I am. Where do you live?? How do you eat?? Is it not depressing enough to have extreme, physical, painful limitations (many of us at a young age) without having to beg, borrow and quite possibly steal from others to survive?? Have we not been demeaned enough by our disease?? To be at the mercy of others for care and basic necessities is to lose one’s dignity. I struggle with self worth and inevitably the tears begin to fall. Hope is fleeting and my future is bleak. While my high school and college friends travel, visit grandchildren and pursue hobbies during their long awaited retirement… I wonder how I can pay my property taxes, keep my house, stay warm, have gas to go to church and eat. Oh, and don’t forget, I battle a demon illness EVERY day.
My point in sharing this is that it is a cautionary tale. If you are at the beginning of your disease and still able to work, PREPARE. I hope and pray that you will find remission or significant relief from the disease progression but PREPARE. Sadly, there are no cures. The disease will win. Some will suffer more than others. Feather your nest while you can so that you are able to provide for yourself if you are no longer able to make a living. Don’t count on others to provide for you. Marriages fail (mine did), children leave (mine did) and the only constant is your illness.
May God Bless you, my fellow warriors.
Fight on!! Don’t give up!! Please PREPARE. I know I wish I had…
The author of this post, Julie, was diagnosed with RA 38 years ago at the age of 20. Her fight has been both difficult and enlightening. Her fight each day is to manage her disease in the best way possible and to find balance between pharmaceuticals and natural supplementation. Her blog, Fighting Back, chronicles her journey.
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