My Life with Ehlers-Danlos: How to Make Medical Expenses Less Overwhelming

February 8, 2017

Readers, I would be lying if I told you that the expense of being chronically ill isn’t overwhelming at times. It’s always worse now when my annual deductible isn’t met yet, and I’m essentially paying out of pocket for everything. (Although, I can’t remember the last time it wasn’t met by the end of February.) I had a bit of an ugly meltdown last week, because I realized the medicine used to treat my tachycardia had quadrupled in price. Quadrupled. You know, because I had an extra $180 a month that I had been hoping to spend on medication.

Situations like this happen way too often in the world of rare disease. Our providers and insurance companies are baffled about how to help us, and a lot of time we, as patients, end up footing the bill with little, if any, help. I don’t have the perfect answer to this, but I have a few tips that helped me get some of my loftier bills under control.

Reach out on social media.

There are Facebook groups for everything. While that fact gives cause for concern occasionally, it is also a huge relief for those of us with rare disease. There are groups of patients assembled online for almost every diagnosis imaginable. If you can’t find a group for your disease, there are groups for general rare diseases or the undiagnosed. The great thing about these groups is the sheer volume of patients who have been through similar circumstances as you. If you’re having a problem with medicine being too expensive, reach out online to see if anyone has a suggestion. My husband and I recently shared about the increased cost of my medicine on Facebook, and a friend had a suggestion that dropped the price of medication significantly. If we hadn’t been open about our struggle, I would still be paying $240 a month for my medicine. But, thanks to a kind friend who shared a web site with me, my medicine is suddenly much more affordable.

Check online resources.

The friend I mentioned above shared a web site with me that really helped. is a web site where you can search any of your prescribed medicines to see if there’s an existing discount card, payment support service, or other assistance available. In ten minutes, I applied for and printed a discount/ co-pay card that dropped my medicine to less than a third of the price my pharmacy quoted. Also, check the medicine manufacturer to see if there are any discounts or coupons available through the manufacturing company.

Participate in Research

I recently saw a post in an online forum where a patient was talking about how expensive a certain series of tests are. Upon reading more, I realized I’ve had the tests at least half a dozen times and never paid for them. The reason I have never received a bill for the tests is because they were conducted while I was participating in inpatient clinical research. has allowed me to participate in research studies that relate to my diagnoses. As a result, I have had the tests conducted as part of the research, but the results are mine to share with my doctor as needed. If you register with Research Match, they will contact you when you qualify for a type of research being performed. You always have the option of refusing to participate. I was recently contacted through Research Match about participating in genetic testing at no cost to me. I’m still waiting on more information, but I am intrigued by the possibility it presents.

Ultimately, being sick in the US healthcare system is expensive. I know there have been situations where I have chosen to not do what is best for my health, because I knew the price would be too high for me manage. I’m guessing almost all of us have been there. However, if we as patients work together to share what we learn as we navigate the medical world, we will learn, and hopefully heal, together.

What money saving tips or tricks would you share with a newly diagnosed patient?


About Tiffany

Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.

Tiffany manages her blog ( ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.

Facebook– Facebook Support Group Instagram-| @crazychronictiff

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