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The Stigma That Comes With Being Undiagnosed for a Decade


I know what I’m feeling is real. The deep bone pain, heaviness in my limbs, and debilitating weakness, although not visible to others, are weighing on me during my every move.

I can’t help but wonder what my friends think when they ask me how I am and I still don’t have a name for my illness after all these years. I can’t help but feel powerless when I want to sound believable but have no props to help strengthen my case. I have said many times, had I been the healthy person on the other side of this conversation, I would think, no one goes to countless doctors over 10 years and has endless medical testing without receiving a diagnosis! But here I am, as living proof this does happen to some people. We are the difficult-to-solve cases. The answers lie deep within our cells, or they may be hidden in the strands of DNA that make up every inch of our being.

I used to feel the need to explain myself to family and friends. I would try to provide an explanation for my symptoms and explain why doctors had no idea what was wrong with me. The truth is, I was always wondering this myself. However, proving the depth of my disability is not going to change the fact that a disease process is paving its way through my muscles. It is already the most real and absolute thing in my life. When I dwell on trying to be credible, I am the one who suffers. I leave these conversations feeling alone, helpless, and mentally exhausted. It is time to focus on what I think of myself and not on what others think of me.

I am still searching for a diagnosis, and I may be doing so for years. I dream of the day when I finally have a name for all of my pain — not to validate myself to others, but to be at peace with myself. This will mark the end of searching far and wide for doctors and researching every known muscle disease that exists.

But until that day comes, I am happy with who I have become while walking this path. I have gained courage to fight, appreciation for the mundane, and self-confidence in myself as a whole.