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When a Mental Health Diagnosis Makes It Difficult to Live With Rare Disease

At just 23 years old, I was mourning the loss of my identity.

A mysterious disease hit me at age 20, leaving me to quit my studies at a university and return to my home country to recover. I hated this decision that my parents made for me, but I could not protest. However, after hours, days, weeks, and even years of mistreatment and rejection from the doctors, I was mourning the loss of myself — as a student, as a choral musician, as a friend, and perhaps, the entirety of my being that was been shredded like dust.

Most of all, my previous mental health conditions did not allow me to adjust to a new setting. I had a strong fear of my peers due to post-traumatic stress disorder, and everything changed from happiness to fear as soon as I arrived at the airport. I often spent days in my parents’ home, befriending poetry and books.

This was my life for the next two years.

However, a genetic test changed my life forever. I was able to see a geneticist who identified recessive inheritance in a gene called Titin. I have inherited a set of mutation from my parents; since my variants are still largely unknown, my rare disease needed further reconfirmation.

And so my journey with a rare disease began. Although I have partially escaped the “grey area” of an undiagnosed illness, I was not able to stop mourning everything I have lost.

Having a rare disease is challenging enough on its own, and my mental health diagnoses make all of it difficult to manage.

When I am not able to escape a day without pain, I’m often reminded of the loss I have experienced. Thinking of my losses leads to depression and continuous worrying. The loss of self triggers my paranoia, and then the fear of my peers sets in.

It is like a never-ending circle of loss, worrying and pain.

I am living in a society that often silences mental health issues, and it does not help my journey towards gaining peace of my mind. When my mental health is ignored, my identity cannot thrive.

When I am being criticized because of my rare disease, my mental health suffers. The feelings of not being wanted and being smothered at the same time are detrimental to my mind and body.

Yet I know my story is only a fragment of those who are living with a rare disease, every day.

When you see someone struggling, lend a hand and allow that person to feel wanted and loved. You never know if your actions could save someone, or heal someone who is feeling absolutely broken.

Love, appreciation and kindness can do so much for those who are struggling with a rare disease.

And that is why I would like to advocate for acceptance and inclusion for those who are struggling with a rare disease, as their mental health is important and must not be ignored.