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I have reached the conclusion that people are basically misinformed, particularly when it comes to how people are affected when battling any disease.  I guess you have to walk in those shoes to understand. And before there is any change, people need to understand what it is like to wear our shoes for just for one hour on our worst day.  

We have a friend battling the third time with testicular cancer that has spread to his kidneys. One friend has Parkinson’s.  Our son has been giving money to his 20-something friend battling testicular cancer that has spread to his brain.  Although his friend continues to work, he doesn’t get paid when he doesn’t work, and has been in danger of being evicted from his apartment.  Our son has been stepping in to keep that from happening.  

My Husband and I have had several conversations over dinner with friends about illness and insurance.  When we mention our friends and their battles, their instant response is, “oh, he can get disability - SSI, or unemployment, or insurance will take care of it.”   And we reply, “no, no, and no,” and put down some cold hard facts.  Our friends are amazed.  It is surprising the number of  people who think disability is this magic source of unlimited income that takes care of everything.  All you do is snap your fingers, and “poof,” the disability check is there and all is well.  And once our battle is over, then all our lives go back to the way they were and life is once again restored to its natural balance....In a perfect world.  

There are many in worse situations, but I will use my husband and myself as a mild example.  My husband went to work out of fear of losing his job, thus losing our insurance.  He was told that if he did not work his hours, he would lose his benefits.  He has chronic diarrhea due to Crohn’s and having 30 inches of intestine removed, and yet he has to ask permission to go to the bathroom, this could take upwards of 20 Min’s to get a replacement for him and if you have EVER had diarrhea, you know that 20 Min’s may be 20 Min’s to late.  He took longer to heal, because of the stress of worrying about how to support the family.  Now he have been fired for “taking too long to get well” and insurances have all been canceled. AFLAC has been fighting having to pay out on the policy he has held for 3 years.

I developed neuropathy (a side effect to chemotherapy). Moving any part of my body produces intense pain. Stairs are excruciating to climb.  Fatigue, pain, and nausea are with me for months.  

But he didn’t complain.  He had to pull everything he had into remaining professional and doing his job.  I can understand how people can get the impression that everything is okay.  After all, if we were truly sick, we wouldn’t be at work.  I didn’t complain to family and close friends, because I didn’t want them to worry.  It is a vicious circle.  

I think it is this silence that has hurt us.  Once the battle is over, we are relieved and concentrate on putting our lives together.  Only those closest to us know we are picking up pieces of our lives long after the disease has left.  There is always that shadow of illness that remains—the little chip of fear that it could come back.  And we really don’t want to talk about it.  This horrible disease was so up front and personal and finally over, and we just want to get back to normal.  

When we speak of our battles with a serious illness - we talk in terms of what stage, which surgery, which treatment and where we are now - clinical terms.  And we are quick to support another about disease, but we seldom mention what it did to us financially.  We just want it behind us and to get our lives back.  Even on my friends’ sites, there is very little mention of the financial and personal losses when speaking about the disease.  We muddle forward the best we can - and I think that is because we are grateful to be alive and accept our personal losses as part of it.  Personally, I never discussed “cost” with anyone, or my fears - partly because I was raised not to discuss such things - “private lives should remain private.”  

Someone told me once that if I didn’t tell them I was ill, or going into surgery, they couldn’t pray for me.  If we don’t tell people the battle is costly, not only physically, but monetary, people will continue to turn a blind eye.  It is time to let everyone know what the definition of catastrophic really means—“financially ruinous.”


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