Living with a chronic illness is an every day reality for many. One such chronic illness is scleroderma: a rare, chronic autoimmune disease that affects some 300,000 Americans. The name literally means ‘hard skin’, though it can affect all the connective tissues (the muscles, joint, blood vessels and internal organs) of the body (source). It cannot be cured, and those suffering from it can expect a reduced life-span of some 25+ years.
This post is part of My Sweet Home Life’s Overcomers series – where we look at women whose lives haven’t turned out quite how they expected.
We feature women who have struggled with abuse, addictions, unexpected loss, and challenging circumstances.
Each of these women have come through their experiences with lessons learned – lessons that can help us all as we navigate this crazy thing called life.
Today we share the story of Poovanesh and her experience of living with scleroderma.
TELL ME ABOUT YOURSELF
My name is Poovanesh Pather and I’m a single mom, former teacher, and now blogger. I’m 58 years old.
I have lived with an autoimmune disease called scleroderma for nearly 20 years now. It has been the biggest challenge of my life but I’m pleased to say I’m still here.
I’ve been blogging since February 2018. Before that, I spent over 30 years as a high school English teacher. During this time, I had a ringside view of teen dramas on a daily basis.
My blog, Family Growth Life, was initially designed to give moms tips to parent teens positively. However moms have other needs as well, so my blog’s second category is personal growth.
My third category chose me. I’d written a post about my chronic illness to give my readers more information after they’d read my About page. It was so well received by all who read it that I decided to include chronic illness as my third category. Living with a chronic illness is challenging and life changing, and I wanted to share my experiences and tips with others going through the same thing.
Related: Overcoming depression: My story.
WHAT WAS LIFE LIKE BEFORE YOUR SCLERODERMA DIAGNOSIS?
I was a very driven high school English teacher. My job was demanding but I loved the challenge of getting kids to enjoy the beauty of English literature.
I had always been the picture of good health. I was chubby but healthy. I had not even had the flu in years. I had also been actively involved in club sport as well until I became a mom.
But life was really hectic with trying to cope with my workload as a teacher, being a single mom and the normal challenges of running a home.
WHAT WERE YOUR FIRST SYMPTOMS OF SCLERODERMA?
At the time I had my first symptoms, I was finding life too busy to fit in going to the gym or a regular exercise program. So when I started feeling pain walking up stairs, I thought it was because I was unfit.
I ignored it for a bit until I noticed that standing for longer than five minutes, and walking and going up and down stairs made my legs ache. At the time, I needed to climb about 20 stairs to get to my apartment so it wasn’t something I could ignore!
In addition, as a teacher, I needed to be able to monitor tasks and help learners by moving around the classroom. I found this nearly impossible to do because of the constant pain.
I consulted my doctor about my strange symptoms. She did some blood tests and then diagnosed me with Mixed Connective Tissue Disease, a glorified way of saying they could not pinpoint the exact cause.
As time went on, blood tests showed a proper diagnosis of scleroderma. In the early days, it was very difficult. I had so much pain that I just merely survived from one day to the next.
There was severe weight loss from the start. I felt cold all the time because my body fat was so low. I totally lost my appetite. I saw a dietitian to improve my eating habits, but it only worked for a short while because I was just too exhausted to take the trouble to make that little extra time for myself.
Increasingly, I found the hectic pace at school hard to cope with. But the administration and my colleagues were sympathetic to my plight. I was allocated a ground floor classroom.
But my other duties continued to put great strain on my health. During exams, there was invigilation which meant walking or standing for the duration of the exam.
I cannot begin to describe the level of fatigue I experienced just from the normal run of the mill work-related activities.
I was a shaky vehicle heading for an inevitable major crash.
This physical weakness was compounded by work-related stress.
I found myself in a constant state of exhaustion. By then my mom had died, we had moved to a smaller home and the responsibility of caring for my family was squarely on my shoulders.
Things reached a head in 2016. I had an epic medical crisis that had me in a coma for 5 days.
When I came out of the hospital, I realized I could no longer return to my job as a teacher.
WHAT WAS THE HARDEST PART OF LEARNING TO COPE WITH SCLERODEMA?
Like many chronic illnesses, the worst part was the physical weakness that my chronic illness imposed on me.
There were so many things that I did not have the energy to do – like a day of shopping with my friends. The walking and trying on of stuff would have had me curling up on the nearest couch for a nap.
I had to rest before any event. For example, if I had a breakfast with friends, I would have to rest the day before to conserve my energy for the following day.
But, over time, as my diet improved, I became stronger and was better able to deal with this.
Today, I can safely say I can do much more than I ever could before.
Resigning from my job gave me the chance to unplug from the rat race.
WHAT HAS HELPED YOU COPE WITH A CHRONIC ILLNESS DIAGNOSIS?
First, my son who was just about 2 years old when I was diagnosed. I had to fight this monster for him especially since I was all he had.
Next, my faith, my obstinate refusal to yield to my chronic illness and my determination to thrive in spite of it.
WHAT LESSONS HAVE YOU LEARNED THROUGH YOUR EXPERIENCE AND WHAT COPING STRATEGIES FOR CHRONIC ILLNESS WOULD YOU SUGGEST?
My most important takeaway is that good health is precious and should never be taken for granted.
Having a chronic illness meant that I had to learn to prioritize myself and to take my self-care seriously.
Being a Type A personality, I never wanted to be a stay at home mom. I felt I would lose myself totally in the process. But, quitting my job saved my life. It released me from physical demands my body couldn’t cope with and enabled me to slow down and learn to live in the moment again.
For those of you who suspect you may have a chronic illness, I say – trust your instincts. If your body is showing signs that something’s is not right, listen to it and get checked out.
In addition to this, do everything in your power to find the right doctor – the kind who will listen to you and support you.
A good support system is essential to help you cope with the challenges of day to day life with a chronic illness. I was fortunate to have my mom and a dear aunt who took much stress off me in the early days of my diagnosis, but your support system could include family, friends, neighbors and acquaintances.
Carefully examine all the components of your life and look at where your support system could help. This could include:
- housework and cleaning
- preparation of meals
- taking the kids to school and after school activities
- transport to and from medical appointments
Have the courage to ask for help. You have no idea how much this will benefit you.
Then, once you get through the early days, remember that a positive mindset can help you deal with anything.
Keep informed about your chronic illness. Be up to date with your prognosis, your treatment and so on.
But most importantly, I advise all those who live with chronic illness to find a creative outlet – something like crafting, painting, or journaling.
This is essential in your journey to recovery. It breathes new life into you. You may find the betrayal you feel by your body allowing itself to be captured by your illness is balanced by the act of creating something.
It could be something simple – a sweater you’re knitting or a herb garden you’re planting.
Personally, I have found journaling to be a great way to vent about the injustice of my illness in a way that I couldn’t do openly with my loved ones. I really believe the process allows you to come to terms with life with a chronic illness.
SUMMING UP MY EXPERIENCE WITH CHRONIC ILLNESS
Looking back at the last 20 years of living with a chronic illness, I realize that it has been marked by both highs and lows. The trick is to take charge of your condition and to do everything in your power to keep the balance on the side of the highs. Now I can say I’m in the best shape ever since my diagnosis.
Take small steps daily to assert your power over your illness. If, for example, the pain is so severe that all you want to do is spend the day in bed, try to get up for a short while. Phone a friend and ask to be cheered up. Watch a silly comedy. Do something to take your focus away from the pain.
There can be no question that a chronic illness strengthens your character. Empathy and compassion for the pain of others is a given. You see determination and success where others are likely to see weakness. Strange as it may seem, for these things I am grateful.
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