How Not to Let Chronic Illness Suck the Life Out of You: Part 3 of 3
7 ways to manage the frustrations of living with chronic illness
Dear Readers,
This is Part 3 of How Not to Let Chronic Illness Suck the Life Out of You: 7 ways to manage the frustrations of living with chronic illness.
Disclaimer: Please be informed that this is my personal experience and not intended as medical advice. Some readers may be sensitive to some of the experiences shared in this story. If overwhelming emotions and memories are triggered, please self-care by seeking the support of a recognized professional.
The rest of the story… and 7 ways to manage the frustrations of living with chronic illness.
If you would like to read the backstory, please click on Part 1 and Part 2.
A Brief Recap
Living with chronic illness is challenging and frustrating. My top frustrations are: the medical system, financial pressure, decreased mobility, and feeling hopeless and despair to the point that I didn’t know if I wanted to live anymore.
These intrusive thoughts of not wanting to live sent shivers up my spine. I knew I was the only one who could change the hopelessness and despair. And with that knowledge, I set myself on a course correction journey over the next several years.
Here are seven of the most important changes I made that helped banish hopelessness and despair:
1. Professional Therapy/Counseling
Chronic illness brings many challenging emotions: sadness, anger, frustration, fear, grief, hopelessness, despair, depression, and anxiety.
Don’t ignore the spiral into negative thinking. Negative thoughts beget negative thoughts. One negative thought attracts another, then another…and so on.
That’s why it is of utmost importance to seek the support and care of a qualified professional. Someone you feel comfortable with to pour your heart out, telling how the illness makes you feel and affects your life.
Professional therapy and counseling are a part of my self-care routine. In my early thirties, I began therapy and counseling to cope in a stressful marriage. It was helpful then and has continued to help during stressful times in my life including chronic illness.
2. Find Meaning in Life
When in the depths of despair, finding meaning in life is a profoundly personal journey. It takes inner work of self-reflection, awareness, and introspection. In addition to supporting you through your chronic illness journey, a professional therapist or counselor can help you find meaning in your life. They will help guide you through the process.
My journey to find meaning in my life took me to discover that I lived superficially, touching the surface of life. Deeply felt gratitude, love, happiness, empathy, compassion, and listening were states I had not known. Each moment, a new lesson presents itself to discover a deeper connection to the qualities I mention. Without a doubt, this practice of going deeper keeps meaning in my life.
3. Improved Nutrition
There is a never-ending supply of nutrition information proclaiming benefits for chronic illness patients. There is the Paleo Diet, Ketogenic Diet, GAPS Diet, Vegan Diet, Whole Foods Plant-Based Diet, Anti-Inflammatory Diet, and so on.
Each of these diets displays many testimonials supporting how patients found relief, reversed symptoms, or completely healed their chronic illness. These diets have in common the elimination of processed nutrient-depleted food and an increase in nutrient-dense vegetables, greens, and fruit.
Nutrition is an evolving journey for me. I was raised on meat, potatoes, corn, and bread. The family placed take-out orders for fish and chips on Fridays and Asian on weekends; I went to the Red Barn with my friends and frequented the family-owned restaurant at the end of our street for cheeseburgers, fries with gravy, and chocolate milkshakes.
Those were the days, eh? I still crave the way I used to eat. Alas, it would kill me now for sure if I tried.
Diet is critical with an autoimmune condition. I experimented by eliminating some foods that are possible inflammation triggers. I found that gluten, dairy, egg, and processed food increase my inflammation levels, causing a swollen body and joints. My body feels the best with whole fruits, vegetables, greens, beans, and sometimes fish, poultry, and meat.
But, I’m also a healthy junk food addict. These are foods that I buy at the health food store that are high in sugar, protein bars, gluten-free vegan cookies, bars, and cakes, crunchy snack foods that are high in sodium, and I love smoothies.
I also have coffee (allowed decafe only), dark chocolate, nuts and dried fruit, gluten-free granola, coconut yogurt, rice crackers, and buckwheat crispbread.
My goal is to move away from my healthy junk food addiction and toward a complete whole foods plant-based diet eliminating all processed food.
4. Creativity
A lifestyle coach encouraged me to start writing. I was already journaling offline, so I decided to create a free WordPress blog in 2010. I was petrified! I had never done anything like it before. The blog’s purpose was to write or journal on what I was doing, thinking, or reading. It became a stress-free way to have fun. I enjoyed this time immensely, visiting other blogs, reading, learning, and engaging.
Joining Medium in March has brought this joy again. This time, my purpose is to find a niche that I enjoy writing in and practice writing to become a paid writer. I could say it’s an experiment.
It has given me something else to think about in the midst of when my body is hurting. It has given me stories to read, and writers to engage with and aspire to.
If you are sitting on the fence about doing something creative, whether writing or something else, go for it. What do you have to lose?
5. Empathy for Others
There is a saying, Before you judge a man, walk a mile in his shoes. (Substitute gender-neutral language.)
My father had Crohn’s Disease, a debilitating autoimmune condition for many years. At the time, I was in my thirties and could not relate to what he went through at all.
But I wanted to help.
The problem?
I was overly focused on helping him fix the problem with lifestyle and dietary changes and perplexed as to why he couldn’t change at the snap of my finger.
Just do this… and this…, I would say, not understanding chronic illness’s physical, emotional, and spiritual complexities.
I remember an occasion when my second ex-husband and I took my Mom and Dad for dinner. The restaurant was a long walk from the parking lot, too much for my Dad to handle, as it turned out.
A clueless me felt ashamed that I had not thought of suggesting to my husband that he drop the three of us at the restaurant and then park the car.
Instead, Dad silently struggled with each step the best he could until he couldn’t walk any farther. He had to sit down.
Shortly before Dad passed on, I was diagnosed with RA. That’s when I began to learn about empathy.
It took having lived experience before I could relate to my father’s chronic illness. I now walked in his shoes.
I have a new appreciation for those living with chronic illness. Now, I relate from a lived experience perspective. When someone talks about the challenges of chronic illness, I listen, usually crying right along with them. I know what they go through from a felt experience.
When my father was alive, I never asked him what it was like to have Crohn’s disease, what were the challenges he faced, how his body was feeling, and how he felt emotionally.
I don’t know why we never talked about it, except that I didn’t realize empathy then.
6. Gratitude
In 2010, I gave myself a 100-day gratitude challenge. I felt that I wasn’t going deep enough into gratitude to reap the benefits. While I had much to be grateful for, people, places, and things. I felt my level of gratitude was superficial.
Deep gratitude lifts you so high that you feel drunk or giddy. It’s better than alcohol or a drug; no brain damage or hangovers. Deep gratitude cause tears to well, spilling over into a deep reverence for life.
Here is an excerpt I wrote on grandeurvision.wordpress.com/100-day-gratitude-challenge/:
What is gratitude? According to my old beat up Collins Paperback English Dictionary, the definition is, “a feeling of thankfulness”. I looked up “thankful” and it read “appreciation”. I looked up “appreciation” and it read “to value highly”.
That is exactly what I found out when I began to practice and develop the ability to feel grateful; I began “to value highly” my life and the lives of those around me. It pains me to admit it, but life’s challenges frustrated and depressed me. Most days were a struggle until I learned about the gifts of gratitude.
Here is a list of some of the practices I have done;
When I wake up, I take a few deep breaths and thank the air for filling my lungs (after all, where would we be without air). I close my eyes, put my attention in my heart area and feel a sense of gratitude, which is a warm, joyful feeling to me. I repeat to myself, “I feel grateful.”
As I go about my day, I say to myself, “I am grateful. I feel great. I feel amazing.” When I meet up with other people, I smile and thank them for helping me (no matter what). Everyone is a gift. Everyone has a gift. Silently, I say to myself, “I am grateful for you.” Then, I put my attention in my heart area and feel a sense of gratitude. Breathe in gratitude.
I look for opportunities to notice things I appreciate and people I appreciate.
At the end of the day, I take a piece of paper and write down all the people, places and things that I am grateful for. Sometimes I list the reason why or I list a quality that I truly appreciate in that person.
Write a blog about my gratitude journey.
Write thank you cards to family and friends to tell what I appreciate about them.
Developing the gratitude muscle can change one’s relationship with chronic illness.
7. Mindfulness, Meditation, Heightened body awareness
I was thought-centric before RA, entirely focused on the thoughts in my head, unaware that I even had a body most days. When people asked me how I felt emotionally and physically, I didn’t know what to say; I only knew what I was thinking. Feelings alluded me.
Once the RA appeared, I couldn’t ignore my body and emotions. Day after day, I felt like crap, emotionally and physically.
Learning mindfulness and meditation helped connect my head to my body.
Mindfulness is a practice that increases awareness of the relationship between my thoughts, emotions, and how my body feels; when I’m stressed, the pain and inflammation increase.
As well, mindfulness is a means of self-preservation. Practicing mindfulness has heightened body awareness which protects me from falls and accidents. When a body has limited mobility, flexibility, and strength, it is easier for bad things to happen.
Most of the time, my awareness is rooted in my body. When awareness is rooted in my head, I’m caught in a stream of thought, not paying attention to the spatial aspects of movement, and that’s usually when accidents happen.
So there you have it, the seven most important things I use in a self-care routine to manage the frustrations of living with chronic illness.
My chronic illness journey is an ongoing, evolving process, which like most course correction journeys, is not a linear process. Change is constant. Life throws curve balls.
Thank you very much for reading! I really appreciate it! Please feel free to leave a comment/response.
There are two ways to help support this developing writer if the spirit moves you.
1. Read, clap (up to 50 times is allowed), comment, or share my stories.
2. Become a Medium member through my affiliate referral link. Cost is $5/month or $50/year.
Benefits: Ad-free, full- access to Medium authors and articles. Writers receive a small portion of the fee, helping to support their work.
