Hello my Zebras and Spoonies! Thanks for coming and visiting with me today. I am glad that you are here.
I have decided that my next series will be about my various diagnoses. I am going to be sharing my personal experiences with these diagnoses rather then discussing what the diagnosis is in all its possibilities. I feel that it is important for those of us who are living with chronic illnesses to share their lived experiences. This has value because many of our illnesses are invisible, rare, hold stigma and are misunderstood. Talking about our lived experiences can help shed light on what it is actually like to live with chronic illness. The internet has given us a platform that we historically have never had before. By using it, we can help change the way that people with chronic illnesses and those with disabilities are being treated both medically and socially.
All of my chronic conditions fall into the realm of invisible illnesses. If you saw me sitting at a bus stop, waiting for a bus you would never suspect that I have a chronic illness let alone a whole long list of them. By telling our stories we can help people understand that not all people with illnesses and disabilities present and look the same. We need people to understand that there are people who need the handicapped spaces even though they are young and don’t look like they are unwell. We need people to understand that you cannot look at someone and understand their life story or the struggles that they have.
By talking about our lived experiences with these conditions, we can help bring awareness to those conditions. When you are a Zebra and have a rare disease, it is all too often the case that people have never heard of your disease. This puts us at so much risk when we are counting on these people as our doctors and nurses to help us manage our condition. Talking about our illness does make people more aware of it. My personal experience has been that every year there are more and more people who know what Elhers Danlos Syndrome (EDS) is when I say that’s what I have. Our voices are being heard. With this awareness is also the inclusion of our illnesses in education. I didn’t learn about EDS during my nursing education. I never heard of it until I was diagnosed with it. But that is changing. Slowly, but it is changing.
This increased awareness increases the odds that the next Zebra will not have to struggle for their diagnosis. The more awareness there is of these rare diseases, the more likely a Zebra will get the proper diagnosis. After all, a doctor cannot diagnose someone with an illness that they have never heard of regardless of how smart or competent of a provider they are. The average time to diagnosis of an Ehlers-Danlos syndrome (EDS) or hypermobility spectrum disorder (HSD) is 10-12 years: for some, it can take decades. Early diagnosis is crucial to positive patient health. This delay in diagnosis is similar with every rare disease. Making the most important part of awareness the health of future Zebras. By telling our stories today, we can decrease that time to diagnosis for future Zebras.
It also has the benefit of allowing us to reach out to others that have shared experiences. This allows us to connect with others who have the same diagnoses as we do. Feeling alone, strange, isolated or misunderstood are common feelings when you struggle with a chronic illness. By finding other people who have the same struggles, you can find understanding and really feel seen. It doesn’t matter how supportive your friends and family are, they will be limited in their ability to emotionally support you through the strange grieving process we all experience with chronic illness. Others with chronic illness will be better equipped to understand and emotionally support you through that grief. Not to mention they are an invaluable resource for symptom management suggestions. Those of us living through this will have many more and usually better suggestions than the healthcare providers for the management of symptoms.
Chronic illness is misunderstood and holds a lot of stigma because of this misunderstanding. Media shows (generally speaking) that people either die or recover from their illnesses and that’s also the experience of the well. It is difficult for them to understand a life that includes an illness that has no cure and never gets better. The only chance they have of understanding what it is like to live that life is if we are telling our stories and sharing our experiences.
Because of all of this, I am going to start sharing my stories in this upcoming series that will start next week. I am also hoping that there will be the benefits that I usually receive from writing about my experiences. It has always been an effective coping skill for me. It is a way for me to better process my experience and reframe it in a way that helps me to better accept my experience. So, I am also writing this series for myself as a tool to manage the ongoing grief that each of us feel in regards to our illness.
I hope that you join me next week for my first installment in the series which will be “My ADHD.” Until then, you take care of yourselves and I hope that you are well.