(Image via baddmom.com)
For today’s NHBPM post, the topic is “List 5 things that changed your life as a patient, caregiver, or Health Activist for better or for worse and how.” Instead of a patient, I chose to talk about my life as a person living with a chronic illness. Here is my life changing list.
- developing a chronic illness
- losing my job and a lot of my independence
- realizing that so little is known about my illness and there is little research
- getting on disability
- starting a blog
Obviously, having a chronic illness that will not go away has changed my life for the worse. I can tell you the specific date and even the time of day that my life started to change. Different events that happen in my life now have the “before” or “after I got sick” qualifier. The doctors don’t know specifically what I have other than it’s some sort of vestibular disorder. They don’t know the cause. They have no definitive diagnosis therefore there is no cure or treatment that enables me to go back and be independent. The only advice my ENT doctor could offer me, after telling me that ear-related balance issues is more common than what people realize, is to find a quality of life and wish me luck.
I was able to get on disability the second time I applied, but I would rather be employed, contributing to society and living independently. When I was able to get the internet, I started looking for as much information as I could. It has been very disheartening to find that there really isn’t that much. The worst part of all of this is that there is very little research into vestibular problems. Little research means little can be done to help me and others like me.
What has made this experience much more tolerable (for me better is not quite the right word) is that I started this blog. I’m very lucky in that I live with a few people who are living with their own chronic illness and we can share and vent about what is happening in our lives. But, they don’t have the same illness or the same physical problems that I do.
It’s the people who I have “met” online who are dealing with chronic illnesses that mean a great deal to me because we have all turned to the internet to search for information and we have found each other. Blogging is so important because, as many people with chronic illness can tell you, there are friends in their real lives who have drifted away because our illnesses have changed us and how we live. It’s not fair, but it’s something that happens to many of us. Even though we may not have the same illness or illnesses (some people have more than one chronic illness), we understand and are there for each other with help, support and friendship.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
sunshine and chaos 