What the HHT?

A Voice for the HHT Community

Asking for Help Can Save Your Life

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By Mariah Ray

mariah-ray-hospitalI had just gotten back from my best friends house. My eyes were red and puffy, and I tried to hide them behind my hand as I ran into my house and down the stairs. The questions to follow if my parents had seen me upset would only make me feel worse. At times like these, I just wanted to be left alone to think about what the future did or did not hold in store for me.

Since finding out I had HHT six years ago and overcoming some of the conditions it can cause, my mental health has grown significantly. I can now think about my condition without feeling completely hopeless and alone. My road getting here has been a long one, however. There were nights on end when I locked myself in my room and cried until I fell asleep and days I walked around school like a ghost with no emotions to hold me down.

I felt weightless and empty. The more I tried to have my case be known, the more rumors and backlash I received. I got to the point where I wouldn’t even speak to my parents or sister about what I was feeling because I figured there was no way they could possibly understand.

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Mariah’s most recent tattoo: “If I wear a mask I can fool the world, but I cannot fool my heart.”

I let myself sink into a deep hole of depression, and found it hard to see the joys of life. Things that once made me happy were putting a strain on my mental and physical health. Basketball, my one true passion, became a cover-up. If it looked as though I was involved and having fun then people wouldn’t ask the endless questions I dreaded so much.

My grades and focus in school began to take a plunge and I used being sick as an excuse. In part I was sick, my mind was sick and my body was having trouble completing simple tasks, but people didn’t know that. In other’s eyes, I had a common cold or I came down with the flu, something concrete they could focus their attention on.

The reality of my story though is I was extremely unhealthy. I gained weight because I began eating my feelings and my hair was falling out. Some considered that I may have diabetes because my blood sugar was low and fluctuated constantly. I slept all the time or distracted myself with books and television. My artwork was dark and depressing with no sense of life or joy. Suicidal thoughts ran through my head weekly. I was a skeleton of my former self and allowed a rare condition to get the best of me because I failed to get help.


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In my experience, people who suffer from rare conditions feel alone and helpless in their fight. What I learned, however, is you need to have hope. With time you will find more people like you who you can share stories and experiences with. You will find great support systems and people and groups who truly care. The most important thing you can do for yourself, though, is asking for help.

Find people you can truly trust and allow them to make those necessary changes in your life. Set up weekly counseling sessions, find local clubs and organizations that specialize in diversity and positive change, make new friends and start doing the things that once made you happy. Take that leap and doors will open in your favor for you to slowly become the person you always wanted to be.

One thought on “Asking for Help Can Save Your Life

  1. I have been living with the knowledge that I had HHT for 30 years. It started with nose bleeds and then gums bleeding. I was finally diagnosed at age 32. In my late 30’s, I was diagnosed with PAVMs. I have had these bleeds blocked by metal coils. I have had this done many times. I now have the AVMs in my digestive system. I lose so much blood that I now have to have iron infusions regularly. I am being treated for depression. It is hard dealing with a disease that no one can see or understand! I just wish I had someone to talk to that is going through what I am! I just try to live day to day because I do not know how long I will live.


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