My Mental and Physical Health Story

Background Information of PKD

   Everyone's PKD story is different, but that doesn't mean you are alone. PKD can impact your life significantly or you can live with it undetected until your late 30's. I have ADPKD which affects every 1 in 400-1,000 people. PKD is a common genetic disease that affects roughly around 500,000 people in the United States. ADPKD is genetic, My Mom, Sister and I all have the gene. PKD runs on My Mom's side of the family. My grandfather, his siblings, and my maternal great-grandmother also had the gene.

My Physical and Mental Health Story

   I got diagnosed when I was 8. I knew what PKD was because it was a common topic in my house, but I didn't know how the disease affected people, I just knew the fancy long name for it. It was a confusing time for me when I got diagnosed. I was already diagnosed with IBS (which now I believe could've been anxiety-induced) and didn't realize the mental effects of PKD. I was missing school a lot due to my symptoms, and making friends has always been hard due to my illness. I was very open about having PKD and would explain the disease if asked. I wanted people to know what I was going through, but that didn't mean they would understand. I was frequently asked, "Why are you never at school?" "How do you keep your grades up?" or "How are you gonna graduate or pass this grade with how much school you miss?". It wasn't just my peers either, there were times I'd get questioned by teachers. I was once asked in the 6th grade "Do you think you don't have a future because of your illness?" As a 6th grader I was upset, I was asked that after I had told my teacher I didn't complete my homework due to being tired the night before. Fatigue is a symptom of PKD that affects me and it's one of the main reasons that I miss school. There are days I can't get out of bed, and I also struggle with anxiety and depression. I don't have high blood pressure but I have a lot of the symptoms that are common with PKD. I've always wanted to be known for something other than my illness. I've never wanted to be known as the "sick girl" or "the girl who misses school". Over time it's been difficult to not be known by those titles. No matter how many times I've tried to explain it to people it depends on the person and their commitment to me as a friend if they want to be understanding.

   I've started to realize that no matter how much I try to explain my illness, no one is going to understand unless they have experienced it firsthand. I never felt that I was sick enough because it was rare for someone to believe my diagnosis. I was told by my high school staff that they legally didn't need to follow my 504 plan. It truly felt that my high school was gaslighting me into thinking I was mentally unstable or a hypochondriac. With the mixture of fatigue from Depression and PKD, There were times I would be in bed for days on end. I quit all of my hobbies due to how depressed I was. This was a very dark time for me. This spanned from December 2023 to March 2024. Even though a lot of people from my school knew I had health problems, I was told by close friends that people were talking about me and saying insensitive things about my health. It was after this that I found that I had many people in my corner supporting me. It was people that I didn't expect but am so grateful that I had them during this time.

The Seen Project

   I wanted to turn my experience into something positive. I founded 'The Seen Project' in March of 2024. This was the absolute best idea I have ever had. It was something I've wanted to do for a while, It's something I wish that I had when I was diagnosed at 8 years old. I came up with the seen project's name because the project is to help spread the word on mental health AND invisible illnesses. The project slogan is "You are SEEN and UNDERSTOOD" because through my experience those are two things that I needed a reminder of. I started the project on a whim and never expected that it would get as much love and support as it has! I am truly grateful for all of the opportunities this project has given me. In such a short amount of time, the project has over 500 supporters. I've met and collaborated with some truly amazing people. This project hasn't only helped others, but it has helped me tremendously. I have gained many skills and confidence. I'm so blessed that I was able to start this project and help others, and myself. My project has inspired people to share their Mental health stories anonymously through a Google form. It can help empower and motivate others to share their stories, It can also help people realize that they aren't alone in their struggles. There is an army of people behind them with a similar story.

I'm so proud of the community I have built and the progress as a person I have made since March. Most of that progress wouldn't have been possible without the project community.

THANK YOU for supporting the project, all of you reading and supporting mean the world.

Written with love by,

Alexis Trischler

The Seen Project Founder