How Body Weight Lies in a Rare Disease?

Read time 6 minutes

This blog is another opportunity to feel grateful. Thank you, dear Universe, you continue to bless me with recovery and health.

This blog post aims to ensure that one does not feel alone in this rare disease journey. From getting the diagnosis to accepting it is just one side of the coin. The hardest part and often the least spoken side of the coin is facing the consequences with a smile on our faces.

As I reflect on my journey with rare and chronic diseases, I wish to acknowledge the perplexing twists my body weight has taken along the way.

Ever wondered what living with rare and chronic diseases is like?

Rare and Chronic Health Conditions affect our mind and body in extremes. They alter our identities in large ways.

I was diagnosed with a rare disease called Isaacs’ Syndrome. Isaacs’ is a neuromuscular health condition that stems from muscle hyperactivity. My lift post-diagnosis underwent a drastic change. In the process, I also discovered that I had Lyme disease. Lyme is a bacterial illness that gets transmitted through ticks. I was also accompanied by Glaucoma. Glaucoma is an eye-related disease that damages the optic nerves. And Membranous Glomerulonephritis is a progressive kidney disease.

How does that impact the body weight or even if it does, should that affect one’s self-esteem?

Let us discuss that.

Post-diagnosis, I was bedridden for almost 2 years with least physical activity. I had immense pain and weakness. I was prescribed a handful of medicines that had severe side effects. I was falling easy prey to infections, a drastic loss in body weight, and excess inflammation in the body.

In this blog post, we will discuss.

What Are the 6 Key Takeaways About Weight Fluctuations?

  1. The Silent Battles Within

When Weight Becomes a Deceptive Measure

From the outside, it’s easy for people to assume that a certain body size equates to good health. But for me, facing Isaacs’ Syndrome and the chronic ailments, the story was far more intricate. My body weight masked the silent battle, leaving me feeling misunderstood and unseen.

It was only when I decided to speak about it and normalize it, did I saw a difference. Change started within me which inspired me to take action and give my best! The journey towards self-love started with the acceptance that I was not going to like others.

  1. Riding the Weight Roller Coaster

The Unpredictable Nature of Chronic Illnesses

Imagine a life where your weight fluctuates like a roller coaster. It leaves one to grapple with the effects of genetics, calorie intake, and other unexpected factors. It is beyond comprehension to unravel the mysteries of how chronic illnesses can turn your weight. It is a wild, unpredictable ride that seems to have no end in sight.

My health was always unpredictable. I was feeling both good and bad, on the same day. It sometimes felt like chaos but that gave birth to creativity in me. I wrote about my uncertainty and pain, and that did not stop!

  1. Medications and Weight

A Tumultuous Dance of Gain and Loss.

As if the roller coaster ride wasn’t enough, the medications prescribed for my condition often added fuel to the fire. This caused my weight to swing back and forth like a pendulum.

There are unspoken challenges in battling the side effects of medications. This was like a double-edged sword. Ranging from the weight gain induced by steroids to the surprising weight loss. Often, it was triggered by other treatments.

My body and the rest it demanded were sometimes the culprits behind my enthusiasm. To add on, there were still other partners in crime. I was overloaded with medicines, some of which worked for my best, and the weight gain was caused by the rest!

  1. Navigating the Chaos

Embracing Wellness Amidst the Storm

Amidst the chaos, I learned the art of balancing my weight. I did this while taming the ferocity of my chronic illnesses.

Let me share the strategies I embraced. I moved from savoring nutrient-dense foods to taming my cravings. I took slow, intentional steps to build an exercise routine. This honored my body’s limitations.

  • I followed a diet and sometimes kept track of my calories, regardless of how difficult it seemed to me.
  • My body did not permit me to move much due to pain, fatigue, cramps, and other symptoms. However, I added some exercises. It helped me cope with related symptoms better. It helped the immune system and blood circulation. I felt my backache reduce and my sugar levels started reducing. It just made me happier, helped the reflexes of my muscles, and positively impacted my sleep patterns.
  • I did not eat less. Instead, I ate right.
  1. Beyond the Scale

Embracing the Full Spectrum of Health

Through my journey, I realized that my worth transcends the numbers on the scale.

I learned to cherish my health over the size of my clothes. It made me recognize that true wellness encompasses so much more than mere physical appearance.

Beauty sometimes lies within. Needless to say, the future belongs to those who believe in the beauty of their dreams.

I wanted to stay healthy and fit. That’s what I visualize every day.

True! My body was not in proper shape, but it was not at its best always.

Still, I started to love myself a little more and that taught me the power of unconditional love.

Righteously said, the journey to loving others starts with loving oneself.

  1. Extending Compassion

Understanding the Unseen Battles of Others

Let’s talk about the importance of empathy. In today’s world struggles aren’t always visible to the naked eye. My journey with the rare disease and the weight gain taught me to be kind to myself.

I started looking at the world through the lens of empathy and that made it a better place for someone else to live in.

I found it easy to connect with others. I also inspired a few to lose those extra pounds. I did encourage people to follow a routine. Likewise, change was only on the horizon.

With this blog, let’s learn to embrace the uniqueness of each individual’s journey. Let us recognize that behind every smile, there might be a story of resilience and perseverance.


Maintaining a healthy weight is important for a healthy us. It could be a helping tool in supporting health conditions. Being overweight does not solve any purpose. It puts us at a higher risk of developing further complications.

As I pen down my story, I invite you to embrace the authenticity of your journey, with all its ups and downs.

Remember that your health is a priority, and the numbers on the scale don’t define your strength or worth. May this narrative serve as a reminder that in the face of adversity, there is always room for compassion, self-love, and the unwavering determination to thrive against all odds.

Wondering about my rare disease journey. Check out this blog post Rare Disease, a Life Changing Story on Isaacs’ Syndrome – Ordinarily Rare


The views expressed above in this article are the author’s own and do not represent any kind of medical advice.

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