*Note from A Chronic Voice: It always warms my heart when I hear a male voice speak up within the rare disease community, Isaac Syndrome in this case. Some facts from the Canadian Women’s Health Network:
“Approximately 79% of the 8.5 million individuals worldwide diagnosed with an autoimmune disease are women.”
And from NCBI:
“The gender differences in the social consequences of health and illness include how illness affects men and women, including health-seeking behaviour, the availability of support networks, and the stigma associated with illness and disease. Men and women respond differently when ill, in terms of time before acknowledging that they are ill, recovery time, and how women and men are treated by their families and society.”
With men less likely to speak up about chronic pain, their emotions and anything deemed overly ‘sensitive’, it is always worth a celebratory cheer when one takes the courage to do so. These men are helping to break societal stigmas of what’s categorised as ‘unmasculine’. No feelings are invalid; we are all human beings who experience a wide and profound array of emotions, men included.
It is my hope that more men such as Rachit will share their stories and experiences, so that other men may feel less alone, too. Thank you Rachit, and if any other men with chronic illnesses would like to share their story on my blog, please click on the ‘Contribute’ menu tab and submit your details in the contact form there 🙂 Now over to Rachit!
Table of Contents
Getting Diagnosed with Isaac Syndrome at the Prime of My Life
I write, dedicating my articles to my pissed off attitude about ‘healing’. I need to learn how to be uncomfortable and to fight back, as to do otherwise is to settle. This is my personal endeavour to help patients all over the world who suffer from a rare disease.
I was diagnosed with a rare medical condition in March 2016. Isaac Syndrome, they call it. Also known as Neuromyotonia – a complex disorder resulting from muscular hyperactivity, and Membranous Glomerulonephritis, a slow, progressive kidney disease. Life was only beginning for me then and I was working as an investment banker, but had to give that all up.
Endless Painful Investigations & Treatments
I had to undergo a plethora of medical investigations, which finally interpreted my symptoms as Isaac Syndrome. Treatments I tried: Steroids, IVIg, Plasmapheresis, ACTH injections, painkillers, immunosuppressive agents, intestine related medicines and alternative therapies.
I was on 38 pills at one point, which were a part of my daily acid tasting platter. My food restrictions were endless due to side effects such as high sugar levels, fluctuating blood pressure, IBS, disturbances of my stomach lining, diarrhoea, and so much more.
Every triumph or progress that I made was fleeting, as the impact of medications and procedures revealed the limitations of my health. It was a tragic experience for me, and it felt as if I were crawling through broken glass; the need to shift the focus on my journey yet again, rather than having arrived at the final destination.
What I Learned from These Personal Experiences with Isaac Syndrome
- To live with rare disorders require extra effort, through maximum discipline and lifestyle corrections.
- Insurance support systems for expensive treatments can be a lifesaver.
- Sports Medicine can help to bridge the gap between fitness and living with a rare disease.
- There is no universal law or a fixed method to healing.
- Utilise all resources available to you during treatment. This helps to ease additional financial, social and personal burdens.
- I felt that a holistic approach was missing during my treatment with medical specialists and doctors. I felt that I could have benefitted from more holistic practices, which might have eased the pain felt during diagnoses and treatments.
- Corporate Social Responsibility (CSR) can be the backbone of society, as it makes serious contributions towards meaningful healthcare research. This in turn can reduce the escalated negative impact on society.
A Central Information Portal is beyond useful, a hub where chronic illness patients, government initiatives, doctors and more can access and communicate with each other easily. This is especially useful for chronic illness patients who are in locations that are less accessible, or who require online consultation or quick support. (Read: How the Growing Trend of Telehealth Impacts the Chronic Illness Community)
Chronic illness patients can use the portal to share their concerns and experiences, and doctors more information. Government initiatives can use it to explore cost effective measures and to better understand innovations. Educational and research facilities can use it to access data and discover remedies.
- Our body is gifted by God, but our ‘monkey brain’ needs our utmost attention, when a man-made crisis manifests itself.
- Adding humour to life can transform it in positive ways for everyone around us. It eases the caregivers’ roles, and the pain felt by family members and ourselves. I still give credit to cartoons, which lifted my mood during those tough days.
No Circumstance in Life is Permanent
I decided to take up table tennis despite my struggles, which I saw as a drug free therapy. Those who battle with chronic illness have much in common with players on a sports field. Playing table tennis was good for my mental health, as it reminded me that any suffering is as constant a phenomenon as losing a game, which is but temporary. No situation or circumstance in life is permanent. As Walt Disney once said, ‘The difference between winning and losing is most often not quitting’.
Accepting Life with Isaac Syndrome & Being ‘Rare’
In closing, I urge my fellow rare disease friends to stand tall, to accept with grace being ‘rare’, where ‘rare’ is an alien term, one that the mainstream outcasts. To live with rare disease is to spend time seeking doctor after doctor in hope for an answer. It is to spend exorbitant amounts of money on treatments that may or may not work. It is the constant search for alternatives apart from prescription drugs. It might even mean that ‘cure’ becomes a favourite word.
At the same time, we need to acknowledge each other’s invisible struggles, one that words cannot express. We also need to work on healthy ways to improve our attitudes, our sense of spirituality and our physical tolerance. These are essential elements of life that can aid us on our journey toward recovery, and may help to reduce our dependency on prescription pills.
I am still patiently waiting for that Midas touch. My only request to my readers would be to share any conducive food for thought, as bailing out isn’t an option for me. Everything in life seems misty at present, and I’m baffled by this recovery code that I need to crack. Yet I would still like to thank my doctors and family, for aligning their own life journeys with mine, and for helping to raise awareness of my rare disease, Isaac Syndrome.
*Note: This guest post is meant for educational purposes and is based on the author’s personal experiences. It is not to be substituted for medical advice. Please consult your own doctor before changing or adding any new treatment protocols.
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