There, I said it. I’m a medical supply hoarder- mostly a diabetes supplies hoarder. (I’m not using this term in a joking manner either). I would like to note *former because I’m finally at a point where I don’t feel the need to hoard supplies now.
Why is that? I’m saying goodbye to survival mode. I said goodbye to a crappy insurance and switched to a new one that is so much better.
I did not feel secure in terms of my health and access for a long time. I am still very fortunate and privileged for many reasons which helped me in many situations, but it was still a rough situation. I was fortunate enough to be born into a comfortable financial situation with two white educated parents and in turn good health insurance. The good health insurance unfortunately changed when my dad passed away. A lot was done to make sure I at least had health insurance because at that time having a pre-existing condition meant that I basically wasn’t eligible for insurance on my own. I was very aware of this at a young age. But again, I was fortunate enough to get help through children’s medical services to help with copays, meeting deductibles, a pump, a CGM, getting enough supplies, other appointments that my insurance really didn’t cover at all, etc. But that ended when I was 21, and what a shock (not), there aren’t a ton of resources for after you reach that age to help with those costs, and resources like this usually involve bending over backwards and a lot of stipulations.
You see, I hoarded supplies with the help of my doctor and many people in my life because I did not fee secure. I did not feel confident that I would be able to access supplies.
I would mysterously get “dropped” from my insurance for whatever reason they had or I would get “lost” in the system. With no notification unless we happened to find out. I never knew how long it would take to get it figured out or when it would happen. Insulin isn’t really an option for me (but they sure seemed to think so), and I was terrified of not having any or any test strips.
But I don’t just have diabetes- I’ve got a lot of other things going such as periods that can sometimes be really debilitating- birth control with my insurance was an absolute headache and pain.
I would have to jump through hoops to prove that I was eligible for health insurance- even after the affordable care act happened. They would treat me like I didn’t know any better- that I would lose health insurance at whatever time they decided that day. They actually always treated me like they were better than me, and using pharmacies that have actually been called out in a lot of stories about access and costs and not treating people right (what a surprise). Whenever I talked with my insurance company or that pharmacy, I felt like I was always being disrespected and that I wasn’t getting treated like a human being. I actually reached out for help via research or asking those who were knowledgeable in this field.
My costs were high for prescriptions and care and everything in between. I also didn’t really know what my costs would be- it was never consistent and knowing up front wasn’t really an option. Mental health and eye exams were barely covered.
I could continue.
I keep having moments where it really hits me -that I am secure- after over 10 years of being in survival mode.
But these moments- where when I go to the endo or my psych for appointments- I know how much it costs and how much my prescriptions costs. I cried (tears of joy)
When I didn’t have to pay full price for my birth control. I cried.
When I found how much my pump and CGM supplies cost
That I could go back to my preferred meter and insulin
That I didn’t have to justify and fight for everything like how much insulin I needed or how many test strips I needed
The pharmacy I use treats me like a human and doesn’t make everything difficult
and especially when I call- I get treated like a human and have been helped every single time.
I keep having moments that make me feel like I have truly made it- and make me so appreciative of where I am in life now- but also that growing up I had the time (Kind of) and knew how to advocate for myself because “I don’t play.” Advocacy is on a regular basis- the big and the little things- but it is almost everyday if you’re aren’t well off. I don’t think people realize this.
But a moment that truly hit me- when I realized that I no longer had to hoard (that doesn’t mean I won’t have backup) like I did before. I was able to combine several storage drawers of medical supplies into one set of drawers.
I don’t have to take up as much space. There would be less logistics. Less fighting. Less fear.
I sat in the middle of the floor among boxes and sorting and everything and cried. I cried tears of joy and relief. I was truly out of survival mode. I was secure.
This hurts my heart and fuels my fire and passion that stuff like this is still happening. That people are still in survival mode- which shouldn’t be a part of diabetes management (or other parts of life- not just diabetes). It fuels and has fueled my passion for advocacy and goals in life- the direction of my career. The part that has been angered that I had to deal with this and that people are still going through this. People are still fighting these same battles- well if they have the time and resources.
and it bothers me that the advocacy to change insurance, healthcare providers, and schools (and more)- isn’t a strong focus of advocacy.
But I’m also enjoying this lack of survival mode for a change. I have more time to be a proud trouble maker. I am hopeful for change, and I hope to be a part of it.
a *former medical supply hoarder and a proud trouble maker
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