In my life, my greatest stress has been work. It all started in my late teens and early 20s. My parents retired when I was 14. A few years and a lot of medical expenses later, I found out that they had been paying a lot of money for my health insurance. The health insurance I had wasn’t even that good. At this time, it was difficult to get healthcare if you had pre-existing conditions. I felt like the best way to get insurance was to make sure I had a job that offered health insurance with benefits, or continue to be a college student.
When I took a five-year break from college, I had some periods of time being employed with benefits. Unfortunately, I had to rely on my parents for times when I did not. To be honest, the second reason I had for going to college was to get education. The first reason was to make sure I had a degree so it would be easier to get a job with benefits. While this may not have been true, it was what I believed at the time. It was a total bonus that I was able to get student health insurance while I was in school. It was also a total bonus that I received a quality education and now have the joy of using what I learned every day of my life.
It is so sad and stressful for me that I worry about if a job has benefits as much as if the job is a good fit. When I completed graduate school, I had a really difficult time finding a full-time job in my field that provided benefits. Just finding a full time job was a challenge. I did some contract and part-time work for a year before I finally got the right job.
I loved my job. I worked for two years at a community college and was able to make an impact on the lives of my students by using my education, personal experiences, and strengths. I was given a lot of creative freedom to design and assess my programs. I loved the students I worked with and felt confident about my performance.
Just after the two-year mark of being at my job, I started to get sick. A few months later, I found out it was cancer. All this time, I had been concerned about my mental health pre-existing condition. Now I had to deal with the expense of cancer. I am grateful to this day that this diagnosis came at a time when I was covered by really good health insurance. Because of that, the cost of my treatment did not put me in a place where I couldn’t afford it.
Because of the side effects from cancer, I decided to quit my job to focus on getting well. That was in August of 2015. Over two years later, I am still responsible for finding, and paying for health insurance on my own. While I have been working for the last 10 months, it is only part time, so I do not qualify for benefits. There is no way someone with my health can go without health insurance.
I face a fair amount of frustration when it comes to working and having chronic illness. With illness comes fatigue, pain, depression, anxiety, and fear. I have an underlying fear that I will continue to get ill. While that is not likely (from an optimistic stand-point), the fear is still there. With all of this, I have not been able to commit to a full-time job. I have a lot of anxiety being in an office setting because I tend to compare my work with others and I feel like I always have to explain myself – whether I am doing a good job or not. I get tired easily and have pain if I sit too long. I tend to be pretty sensitive and emotional. I always have been, but starting menopause after a total hysterectomy at 32 didn’t exactly help.
In my current job, I do not have a consistent schedule that provides routine and structure. I work in several locations doing different types of jobs that require different types of energy. At least once a week, I am required to put in a 10 or more hour day. I thought I would be able to explain my challenges and advocate for myself better than I am doing. I have worked for years on having routine, making time for exercise, fun, nutrition, complimentary medical services, and rest. I have learned that scheduling and planning really helps to maintain balance.
The foundation and mission of my business is to provide self-advocacy education based on my model. I thought I was doing that in my own life. Now I know why I tell clients that the most important step is to KEEP GOING. I feel like I am being tested. I know I am being misunderstood. I am genuinely at a loss because I have no idea how to continue to advocate for myself in my current situation. I have run out of possible solutions. I have gathered and presented facts, I have asked for help brainstorming. And now, I am not being the best possible me I know how to be.
I feel like I am starting to obsess about how I can make my schedule work for me. I have constant anxiety and continue to think about it even when I am not working. This feels like it is throwing off my balance. Because I am spending time obsessing, I am not making time for exercise, eating more than once or twice a day, or spending the time I need to be calm and alone. When I am am not obsessing, I am spending a lot of energy trying to squeeze in time for projects for my business. This brings me so much joy, but I want to have more time and energy to contribute to it.
I have spent a ton of time writing lately. I made a promise to myself that I would post every Sunday. Last week was the first time since February that I didn’t post. I have been working on my book a lot and giving myself some pretty strict deadlines for that content. My new website was launched this week and I spent time communicating with the wonderful Darice at FullCup to make it the best product possible. Trust me, it is. Check out the masterpiece she created here.
I know there is hope. Life really is a journey. If I got to the destination, the journey would be over. I don’t even know what the “destination” is. I do know that the journey can be devastating, exhausting, frustrating, and expensive. I also know it is fun, exciting, and full of love. While I just wrote about the cost of chronic illness-physically, mentally, emotionally, spiritually, and financially, I am still hopeful. I am still resilient and I am going to follow my own model and KEEP GOING.