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This blog is another opportunity to feel grateful. I thank you dear Universe to continue blessing me with recovery and health.
A rare disease patient may face challenges that are quite unique in comparison to someone with a common medical condition.
I get overwhelmed thinking about that evening walk on the beach after coming back from a hectic day’s work. The climate was like a pleasing animation. The smiling faces and many things that came close to feeling pleasant while taking a stroll on the sand. I was unaware that my sudden leg cramp and aggravating pain in the lumbar region would get me bedridden.
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.
Rare and Chronic diseases, by and large, chronically debilitate and are progressive in nature. It comes along with major setbacks among which social disconnection aches the most.
My diagnosis gave me weird experiences in almost all the genres of life. It included the way I lived, worked, played, and interacted with people. It left me socially disconnected dipped in loneliness with a socioeconomic setback.
Loneliness hurts, isn’t it?
The news of the life-altering diagnosis and worsening symptoms put me in a tight spot. I felt surrounded by boundaries of rules, challenges, and perspectives. The catch was associated with clinical symptoms and diagnosis.
It was strange to accept not being able to do things the normal way. The coffee breaks, weekend plans, and not being able to connect with friends like before were some unusual changes. It was a setback as having a life pre-diagnosed was like living a cheerful life full of activities. When not at work or home, I preferred hanging out with friends. With time and growing illnesses, things changed a lot. There was a baseline difference in my social engagement activities as I was seen differently post-diagnosis.
My social interactions were put to the test and it was a task to discover who was in my corner. My interactions with friends and relatives declined and continued to dip in the immediate years surrounding the diagnosis. People seemed confused about my situation and most preferred to ignore the issue. Though many celebrated milestones in their life yet chose to disengage with an important life-changing event in my life.
I discovered the importance of Support Groups while seeking access to coping strategies. Joining one was an opportunity to share personal experiences. It was a platform that understood the impact of a rare disease. Also, I got firsthand information about my illnesses. It filled the necessary gap between my need for emotional support and treatments.
I inculcated a coping and self-care mechanism that was helpful:
- Accepted the new change to life: Along with the other changes in life, I started to accept changes in my social life. It eventually made me complain less.
- Kept Patience: keeping patience helped me with the treatment regime in totality. My social happiness depended a lot on my friends. Initially, none of them could resonate with my health condition. With patience and the passing of time, many got a better understanding of my condition.
- Sought counselling: though visiting a counsellor helped but it didn’t end there. Coming closer to family members and finding a confidant did the trick.
- Tried managing my thoughts: it was one of the key aspects of my recovery. Getting involved with interesting activities was a great way to divert my mind. In the beginning, it was a task to listen to my favourite piece of music or watch a movie. With the passing of time, I got involved with hobbies. Distracting my mind with constructive things helped me cope better.
- Asking a friend for social support: I started exploring other ways to connect with friends. It was an experience to learn and re-learn how to connect with others. My world was too confined to what I was dealing with.
- Connecting others: it is a powerful tool for mental wellbeing and loneliness. It gave me a sense of empowerment.
What do you do when life knocks you down? Do you give easy or stand up and start to walk again? Living through challenging times takes a heavy toll on our outlook yet gives us the strength to move on. I seemed to have only gained enough resilience and strength in my journey.
It is important to seek support and build a network of understanding individuals. Our motive behind interactions is to express ourselves. It is important to step out, focus on self-care, and explore coping mechanisms that work for each one of us. With a message of hope and resilience, strong social health could help us heal from the rarest of diseases.
How do you manage socializing with your chronic health condition?
The views expressed in this article are the author’s own and do not represent any kind of medical advice.