An Open Letter to My Late Friend With an Invisible Illness

Decades ago, you passed quietly through the background of everyone’s busy lives. My heart still aches for you, even more now.

You see, I didn’t know what you were going through for all those painful years. Your invisible illness was just that — invisible. I didn’t understand it, and I didn’t take the time to see what couldn’t easily be seen. Your reality was largely ignored when you needed people to notice it. I failed you.

You were desperate for the doctors to believe you, too. They lacked the knowledge to help you, and that’s so unfair. I now know how difficult it is to live with a disease without treatment. Being told you’re “just depressed.” Having doctors say things like, “You’re too young to have these issues.” You were suffering from something uncommon, so it was dismissed. Those experiences are often worse than the physical torment of a mystery illness.

People labeled you a hypochondriac. They said you were just an attention-seeker, that you were weak. The thought of this is unbearable. You were living in pain and fear, while so many around you put tape over your mouth and a bag over your head. You were a victim in many ways. I’m ashamed I didn’t know enough back then to be your ally. You simply needed one person to free you from that lonely prison.

I try to take solace in the fact that I was young and naive, but your story will always weigh heavily on my soul. I can’t fix how I failed you, but I can promise that from now on, I’ll keep amplifying stories like yours. I’ll never stop being a voice for you and those walking similar paths. No disease should make a person feel invisible.

Recommended Reading

August 18, 2021 News by Shayna Korol

Register Now for Global Genes’ RARE Patient Advocacy Summit

Gone, but not forgotten

I remember the day you died. At the time, I didn’t understand why. You still had so much life to live.

No one really talked about your illness. Now, I wonder if it was because they felt guilty for not believing you. After all, no one dies from a make-believe illness. The day you moved on from this world was the day your illness finally became visible — but this visibility shouldn’t have required your untimely death.

To this day, no one knows what medical condition you had or why your body failed at such a young age. Has medicine advanced enough that you would have been diagnosed today? I can only hope.

This world was cruel to you, and I’m so sorry. You didn’t deserve to suffer alone. You should have had more support. I wish I could have been that person for you.

We can do better

Sadly, this story is not uncommon. People with rare and undiagnosed diseases often suffer alone. Their experiences are constantly invalidated and diminished, even by those who love them and mean well. We can all do better at empathizing and supporting one another. It starts with an open mind and trust. Open your heart and listen. But most importantly, believe them. Invisible illnesses may be hard to see, but they are real.

If you are suffering alone, please reach out. Keep looking for someone who will listen. There are doctors, support groups, and strangers willing to hear you. I am listening! Everyone deserves treatment and a hand to hold during difficult times. Every illness has a face, and together, we can give them each a voice, too.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.