A New Month to Share My Life Experiences with Chronic Illness

It’s with great appreciation for another chance to share with our community, that I thank A Chronic Voice for organizing the monthly Writing Prompts for People with Chronic Illness and Disability.

Asking

It seems to me that every time I show up for another doctor’s appointment, I’m asking for help. There are so many appointments! Seeing specialists takes time driving back and forth, and all the waiting for blood tests, MRI’s, hand therapists, x-rays, etc… Some of the things I’m asking:

• What treatment do I need?
• Did that treatment improve my test results?
• Why am I not improving?
• Are we just trying to monitor things?
• Can I switch medicines, because of bad side-effects?
• What is the prognosis?

I never show up to an appointment because I like waiting rooms and having a chat with the nurse. I certainly don’t make an appointment because I like paying my co-pay. If I didn’t want to ask a question about my health, why would I even bother. It’s funny that most of the time I know that there will be no answers to my questions.

I also know that I won’t like the answers that come. Too much of the time asking is worthless. They can’t help me and some of them don’t even seem interested in my questions. But, I keep asking because I’m in pain.

Overthinking

Overthinking started early in my life. I don’t remember exactly when it started, but I remember that it was in my childhood. It seemed that the first I remember it was in examining my day at school. Socially, I was accepted and had plenty of friends. Being insecure and feeling awkward made it difficult to just enjoy social situations.

Not everything caused me anxiety, but I certainly had plenty of it. Having a father that was very critical probably caused me to feel like I didn’t quite fit in. The way overthinking worked in my life was that at the end of every day, I asked the same question of myself:

Did I have a good day?

Did I look okay?

Did I embarrass myself today?

Did I have good conversations? etc…

As I got older, the overthinking faded some. Always the introvert, I would much rather think than talk. Too much thinking makes anxiety worse. After having children I soon learned that what other people think doesn’t matter much anymore.

When my children became teenagers, overthinking kind of disappeared. Now that I’m past 50 I care even less what people think of me. To a certain extent, that’s where I want to stay.

Humbling

Living with chronic illness has been very humbling. My first chronic illness was scoliosis. After I was done with bracing, I lived with chronic pain. Although it worsened as time went on, I could handle it and I didn’t let it affect me. I functioned well and very few people even knew about my problem.

College was much tougher, because of all of my piano practicing. After practicing for many hours each day, I would go to bed having bad back pain. I wasn’t trying to get any help and just thought that this was my normal. I was still able to be very active. After having children, my back was much worse.

So many health discoveries came next: hEDS, autoimmune concerns and Sjogren’s, migraines, dysautonomia, neuropathy, osteoarthritis, ostopenia, mast cell disorder, hypothyroidism, hyperparathyroidism, avascular necrosis, meningioma, asthma, and more. These diseases were found one at a time, over the years.

With each new diagnosis, came all the stages of grief. Humility was a natural result of feeling helpless. I was now dependent on others so much of the time. With each new diagnosis, there was hope for treatments that would enable me to function well. But there was never an improvement that brought an easy life for me. It’s been and continues to be very humbling.

Valuing

Throughout my life there have been many people that I have valued. These people provided me with security and a foundation. As a child, having these people made me feel loved and helped me to feel like I could dream.

They valued me and loved me. They wanted good things for me and invested time and money to help me on my way. When I was young, I didn’t even know this was happening. I did know that I felt love toward them and loved being with them. These people included my parents and both sets of grandparents.

Grandparents provide so much stability and I was thankful that they lived long enough to see my first child. I value all the wonderful things that I learned from them. At the time, I knew that they were great and valued them even more as I became an adult. In my sixth decade, I value their memory more than ever.

These people taught me their values: hard work, honesty, taking the initiative, gratefulness, and more. Their spiritual values were also very important to them and to me. Even after becoming an adult and seeing other types of values, I’m sure of what I believe. I’m thankful that God sees value in me.

Reclaiming

Over my adult life I’ve often contemplated reclaiming my true self. Today there is a lot of emphasis on self-worth. During each season of my life, I have wondered if I lost my true self. I made the choice to stay at home with my kids (I’m thankful that I had that option). That meant I wouldn’t have time to pursue my music in a serious manner. Later, I did some music instruction and that was nice. When I could no longer get my fingers to move the right way, I had to let that go.

Selling my beautiful flute was a bit traumatic for me, because it meant my dreams and joy were over. At the present, I am just glad to be alive. I would love to have an active life, but that’s not happening.

I wrote about these stages in my life because at the end of each I considered the question, “do I even know my true self anymore?” I’m 64, but feel like I’ve been alive much longer. After each of these seasons of life I thought I was missing something by not reclaiming my former life.

Part of that feeling is that I would love to reclaim my youth. Reclaiming the easier time of living with all of my dreams intact would be so nice. With each season of life, I feel like I was a totally different person. Each time a new season came, my priorities shifted. I made different decisions and with each change I challenged what I believed about the world.

I’ve accepted that with each season I wore another “hat.” With each hat came different choices and I accepted different responsibilities. I freely decided not to try and reclaim myself. I’m not saying that I didn’t think about it, but wanted to look forward. Although, sometime with nostalgia, I look back to remember wonderful times in my life.

For by the grace given to me I say to everyone among you not to think of himself more highly than he ought to think, but to think with sober judgment, each according to the measure of faith that God has assigned. Romans 12:3

This is a challenge for me to be content and not to worry about myself but have intentional soberness of thought.

@2026, copyright Lisa Ehrman

I’m not a medical expert. This post contains my experiences and opinions and is not meant to be taken as medical advice. If you have medical concerns, please consult your personal physician.