Self-Reflection with a Chronic Illness

My self-reflection journey had two significant steps: step one, reflecting on life immediately after receiving my diagnosis; and step two, reflecting on life after Jai’s birth. You could say that I am in the middle of step three because self-reflection with a chronic illness is a lifelong exercise. I am a firm believer that self-reflection should be a lifelong practice regardless of your health. It keeps us moving forward and prevents becoming stagnant.

Today’s post is about the answers I came up with when I looked at my life just after my diagnosis up until now. Like with Monday’s post, I will end with some questions to ask about your current situation.

Post-Diagnosis; Pre-Health Minded

I have discussed this period of my life a few times on the blog.

After my diagnosis, I was in not in a healthy emotional place. I grieved the loss of my “old life,” such that it was. I tried to process the physical betrayal I felt, the uncertainty of my future, and why I felt like life just hated me. Despite that, or perhaps to help cope with it, I did self-reflect a little bit about my life and MS.

A thought I kept coming back to was my mortality and what that might look like. While MS is unique to everyone, the only example I had in my life was Annette Funicello. I swore that my health trajectory would take me to a place where I would be trapped in my body like her. I told those close to me that I was convinced my RRMS would progress to SPMS by the time I was forty, just eight years away at the time.

I was in a weird space of fighting the progression of my disease, but also just accepting what was happening. Part of my anger and self-loathing I had at the time led me to just want to give in and let MS kill me. But I also wanted to fight MS and get healthier. Torn between the two extremes I got stuck in a holding pattern for several years.

I did make an effort, if you could call it that, by speaking with my neurologist about disease management through healthy living, but I didn’t make any of the changes I told him I would. Thankfully, he was patient with me to wait until I was ready to get onto a drug regimen to manage my MS.

Once on Copaxone and later Tecfidera, I managed my flare-ups. Any exacerbations I got tended to be mild compared to the ones I got off medication. I was still super stressed, not exercising, not eating well, and not feeling good. The medication worked overtime.

2014. Hampstead Heath, London, UK. I was on Copaxone at the time, but unmotivated to take care of myself. I tried several months before to live “healthy” for a while, but failed to actually do anything.

In the rare quiet moments, I did reflect on how I was handling the MS. I knew I wasn’t doing enough to manage my illness. While I took the medication, it was the bare minimum. I wallowed in the disease, I felt bad for myself, I punished myself by not making the changes I knew I needed to make. My life was filled with stress, anger, frustration. I was petty, toxic, and resentful.

I eventually accepted my illness, but I was still stuck. I was wasting what I percevied as precious time. In short, I was burnt out and therefore unable and unwilling to make important life changes and I knew it.

Current Mood: Looking Up

My perspective changed once Jai was born.

I feel uncomfortable admitting that my child motivated me to make changes, I once had a therapist say that when mothers use children for motivation, it gives a child a job. This was several therapists ago, so it’s possible I am misremembering the intent behind the thought.

Regardless, I wish I motivated myself to make the changes. I am grateful that Jai’s presence prompted me to become a better person, but I wanted to be able to say I had the strength within me. To be the best possible mom for Jai meant I needed to make changes and stick with them.

2019. Las Vegas, NV. While I am not back on Tecfidera, I decided to actively be healthy in addition to working with my neurologist to manage my MS. I run, watch what I eat, manage my stress, and listen to my body’s needs via reflection.

Committing to make healthy life changes was one massive step in self-reflection. I needed to figure out what I wanted to do, how to do it, and if I could do it. I had to be clear about my motivation and make sure I wasn’t actually just making excuses.

I would need to dig deep to find the roots of any resistance for change. Why did I fail at changes in the past? Why were some of my health plans non-starters? If I wanted to be successful I had to figure out why I had some of my failures.

I recognized there were parts of my personality I did not like, and it was holding me back from finding personal success. It was only through self-reflection, whether I intended to reflect or not, was I able to actually make the important life changes. I planned things out more, rather than hurtling headlong into something and hoping for the best, and accepted when I encountered setbacks.

It was a slow start, but a start just the same. I’ve found things have since snowballed.

Self-Reflection with a Chronic Illness

As with Monday, I created a set of questions meant to help you through your own self-reflection. You may not need this reflection because with a chronic illness it’s hard to not reflect on where you currently are in life. It’s still important to check in with yourself frequently. Health conditions shift so quickly that being adaptable is essential to maintaining a calm demeanor.

Self-Reflection Exercise

Try to answer the following questions as thoroughly as possible. If you are like me and cope with memory fog, write your responses down for future comparison purposes.

  • How is my illness impacting my life?
  • How am I best managing my illness?
  • How am I best managing my life?
  • What more could I do to help myself?
    • Do you want/need to consider making changes to help your caregiver?
  • Am I using my time wisely?
  • Am I taking what health I have for granted?
  • What is my current perspective with my health and life?
  • What more can I do with my life and with myself?
  • Do I allow negative thoughts impact my actions?
  • Do I allow negative thoughts impact how I approach my chronic illness?
  • Am I giving up control when I need to and taking it when necessary?

Appreciating the Moment

One thing I’ve learned in asking myself these questions is that I want to appreciate every moment.

It’s important to be careful, I have found that trying to appreciate every moment can lead to “mindfulness fatigue”: where you stress out over whether or not you are actually appreciating a moment.

Mindfulness fatigue aside, I realized I spent a chunk of my time waiting for life to send me an answer on whether I should do something or not. Even when I would venture out to try and do something, I was still a passive participant in my own life.

By saying “enough,” I am no longer stagnant and any failures I face are not failures or “just a door closing,” but learning opportunities for me to adjust, adapt, and overcome to achieve my goals. I’ve had to adapt dreams due to my MS, I wanted to be a writer and never would I thought that my writing would take this turn.

On Friday, we’ll take the answers and begin the process of creating a realistic vision for our future. If you want access to this information, please take a minute to sign up for the newsletter to read Friday’s post.

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4 thoughts on “Self-Reflection with a Chronic Illness

  1. Pingback: Looking to the Future | MS Mommy Blog

  2. I really enjoyed this. I am going to do my best to answer the questions soon and then again after a month or so to see the changes. This was pretty amazing and I thank you for sharing this!

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