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When You’re Forced to Compromise Your Health for Insurance

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I want to discuss a growing problem for many who live with chronic illness. This is a growing issue that poses a particular problem with those who require ongoing medical care, but it is affecting a large number of people.

I have rheumatoid arthritis. I was diagnosed in December 2014. I began treatment after my initial appointment with a rheumatologist in April 2015. Within this last year I have started therapy with multiple medications to help control the disease and slow the destruction of my joints. Unfortunately, the time required to wait for my initial rheumatologist appointment combined with the severity of my disease (which had already destroyed multiple joints) left me needing multiple surgeries. Disheartening still was realizing at the end of 2015 that I would no longer be able to afford my health care, with insurance.

I’m not the only one. In a recent thread on social media, a friend shared how upset she was about the $800 bill she received from one test during a recent trip to the children’s hospital with her daughter. This sparred a conversation with numerous other people who were experiencing the same thing. All those responding had insurance with high deductible plans. The families and their employers are paying premiums for plans that don’t pay anything until a deductible of several thousand dollars is met. This is sadly becoming the norm for families like mine that live on a limited budget and don’t have the money to meet the financial burden required to use the health care system.

I have disabled child and I have a chronic illness. Thankfully, our state offers assistance to children with medical disabilities that helps assure my son doesn’t go without the medication he needs. But the system isn’t perfect. Social security and insurance isn’t automatically provided to underage children with disabilities. Many times the only coverage is through private insurance. I can recall many of our own horror stories as well as those of other parents with children with special needs who have had to fight with insurance companies, only to run out of medication for our children. It isn’t right.

I spent the better part of December wondering how I was going to continue my medical care. We have since received generous help from friends who helped meet some of our financial needs, but we still don’t have enough money to pay for the doctor’s appointments and medication I require. Now we have to see if my doctors will work out payment plans, see me less often and reduce my medications to help me try to meet the financial demands of my illness and those of our family.

I guarantee many people are lying in bed with the same worry: How can I afford to pay for my care and still buy groceries or pay my mortgage? I know because I’ve talked with them. Parents are sick over the large bill they received because their child had an unexpected visit to the hospital, the caregiver to an aging parent is worried because they have to figure out how to pay their mom or dad’s mortgage while they spend time at a nursing home in rehab, or a parent of a child with severe epilepsy is crying because their insurance company is using every last tactic to stop shipment on the only medication keeping their child seizure-free. How is any of this OK?

Is anyone else ready to speak out about this? I hope so, because no one should ever have to compromise their health care. Sadly, this is happening every day.

Follow this journey on CrossRoadTrippers.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

Originally published: January 8, 2016
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