Illness Army: “The Income Battle”

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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11 comments

  1. You’ve pointed out certain things that no one likes to think about – mainly, that “some day” can turn into tomorrow. I always thought I would be able to work through all of my illnesses. However, I now have to alter my thinking to come to terms with being financially devastated. Since I also have been sick throughout my entire adulthood, there hasn’t been much of a chance to save and prepare – old medical bills couldn’t be paid off before new bills accumulated, and sometimes I’ve had to choose between paying rent and eating. This isn’t happening because we are bad people and we deserve to be punished. I just wish there was a way for those that feel especially smug about being lucky enough to be relatively healthy to live our experiences and maybe rewire their thinking.

    Liked by 1 person

    1. Oh yes, there is another battle… fending off the comments and judgement of those who feel we are “lazy” or “living off the system”. People can be rude and brutal at times but one thing I have found as I fight these battles is that I have absolutely no doubt who my true friends are. My friends may be fewer but the ones who have stood by me have proven to be the best friends of my life.
      No, we are not bad people. In fact, my fellow warriors are the kindest, strongest folks I have ever had the pleasure to meet! Fight On!!!
      HUGS
      Julie

      Liked by 1 person

  2. I’m so sorry to hear about how the system treats those people who need to go on disability. You’ve been amazingly strong through this and it shows in how you’ve lived your life. I’m wishing you the very best – and perhaps a reformation of this flawed system is in order! You’ve done nothing wrong and do not deserve to punished for something you cannot control.

    Liked by 1 person

  3. Boy do I understand what you are saying. I’m 64 recently divorced and on disability, not enough to live on my own. I am living with my son and his family. I struggle every day to not have to relie on my sons financially. I clean their house, wash, keep my grandchildren whenever needed to at least feel like I am some help to them. With my disabilities it is a struggle to keep up.

    Liked by 1 person

    1. So happy to hear you are able to be with your son and grandchildren, Ava! I totally understand how badly you want to continue to contribute. We have lost so much during our ongoing battles… the struggle is real… we battle the disease and we fight to hang on to things that others take for granted. I am continually frustrated with the limitations my disease has brought upon me as I am sure you are too. Sometimes I find that frustration harder to deal with than the disease itself. Please know that you are not alone, Ava! HUGS
      Julie

      Like

  4. We offer Long-Term Disability insurance to our employees. It’s one of those benefits that everyone takes for granted until a coworker ends up needing it. So many of us prepare by buying LIFE insurance, but the odds are such that we’re FAR more likely to need long-term disability insurance than life insurance. We plan for a sudden, unplanned departure from life…but we’re awful at answering the question of “what happens if something devastating happens…and I DON’T die?”

    Like

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