To What End?

Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. So, today I want to talk about the reasons that I spend so much of my time talking about my medical stuff on various social media platforms. There are several reasons that I feel this is an important activity to engage in.

The first reason that I do this is for myself. This gives me a place to talk about my medical problems and emotionally process the things that are going on in my life without having to dump all that on the people I live with. I talk to them too, but it’s important that they aren’t my only outlet because having chronic illness is big and creates a lot of baggage for a person to work through. It’s never a good idea to try to have one person handle all of that with you.

I’m also doing this for myself because I love to write and to create things. Medicine is my special interest so I really enjoy talking about medical things as well as learning new things. There isn’t a way that I could spend too much time engaged with this topic. By having the Zebra Pig project, I have a structured and organized way of engaging with my special interest. That just makes it easier and more comfortable for me.

The other reason that I do this is because I believe that we need social change. We need the medical system to change. We need the way that medical providers think about chronic illness and patient management to change. We need more medical autonomy. I find it mind boggling that 60% of American adults have a chronic illness, yet nothing within any of the American systems is set up to accommodate someone with chronic illness. And that percentage is going to dramatically rise as we get more and more people with long covid. We cannot continue to pretend like people with chronic illness do not exist.

Educate, advocate and relate. Those are the three principles that I believe are behind creating social change. Those are the things that I strive to do when I create Zebra Pig content. I feel that I am in an interesting position to talk about chronic illness as I am both a medical provider and a patient. I can speak to both sides of this issue. I understand the challenges that nurses and doctors are facing when they are forced to schedule patients for 15 minute appointments. But I also understand the challenges a chronic illness patient faces when they don’t have their medical concerns addressed because they ran out of time for their appointment.

I try to provide accurate information about what is happening in the medical system and the reasons that it isn’t working. I also try to provide information regarding medical conditions and the human body. When we talk about things openly, it helps to break down the stigmas that are attached to them. There is so much misinformation out there that I just want to add another voice to the chorus of truth. Because there are too many chronic illness patients who are being scammed by products that have no science behind them. And because people need to understand what is happening in the medical system if we have any hopes of changing it for the better.

When I talk about my personal experiences with my chronic illnesses, I do so in the hope that it is useful. Perhaps it will help another person with chronic illness feel a little less alone. Maybe it can help an able bodied person understand what it is like to live with a body that doesn’t always function the way that it should or the way that you expect it to. Hopefully other health care providers can learn what the other side’s perspective on these issues are. Being able to relate to each other is a fundamentally human experience, but when we cannot even imagine what the other person’s experience is like, how are we supposed to relate to it?

Maybe I can be a bridge, getting people from not understanding to relating to those with chronic illnesses. It is worth it if only a handful of people choose to cross. And if all of us raise our voices and tell our stories, then maybe we can get many to cross that bridge. Because it is really difficult to hate when we relate and see the humanness in each other. And when we are seeing each other’s fundamental humanness, we are more likely to be compelled to make changes in our lives to protect that other human who is not so different then the self after all.

The more of us that speak out about our lived experiences as chronic illness patients, the easier it is to see that our stories are not isolated incidents that occurred due to unfortunate circumstances. When you see that these stories hold parallels with each other, it becomes difficult to deny that the medical system is failing to provide adequate care to 60% of the American adult population. More really, because we are not the only group that the medical system is failing. As more of us tell our stories, it becomes more and more clear as to what is not working within the medical system. And this is a fundamental first step that must be taken if changes are to be made.

So, I do this for myself and my fellow Zebras and Spoonies so that we can have a safe community to belong within. I do this with the hope that there will come a day when there are people who have the power and the capacity to make the meaningful changes that we so desperately need. When they arrive, I would like them to already know what is broken so they can get right into the problem solving of how to make things better. Because we need more medical autonomy and we need more medical compassion. We need health care providers who value the patient’s lived experience as much as the education they received to earn their license.

Thanks for coming and spending some time with me. I hope that you all find peace and wellness. Until we talk again, you take care of yourselves!

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