I am not my illness
A series about “diseases” /“chronic illnesses” and everything in between. Today I had the honor of speaking with Kenzie who has a condition called Wilson’s disease. Wilson’s disease is a genetic mutation that affects copper metabolism. Copper isn’t eliminated properly and instead accumulates, possibly to a life-threatening level. Symptoms typically begin between the ages of 12 and 23.
Please remember I am not a doctor just a certified herbalist, juice specialist and death doula in training trying to help the world heal and bring awareness to the many different “illnesses” we have on this planet.
If you would like to be interviewed or know someone please feel free to send me a message.
Would you like to use your real or fake name?
You can use my name, kenzie (:
Where are you from?
I am from McKinney Texas
When were you diagnosed?
February of 2022 right after my 22nd birthday. The craziest part is I remember that whole month my family and I had prayed for a diagnosis as a birthday miracle.
how old were you?
I was 22 years old when I was diagnosed
How long did it take you to be diagnosed?
I had had symptoms almost my entire life and spent over a decade looking for answers. I was dismissed by many doctors and even had some make horribly unprofessional comments such as calling me a “hopeless case” to my face at only 12 years old. One Gastroenterologist told me to “come back when I gained weight”, when I had come to him complaining of nausea, vomiting and weight loss as my main symptoms. He then refused to let me come back to see him or anyone else in the (very large) gastroenterology practice he was a part of, forcing us to seek out a new doctor at an entirely different hospital with no referral. Another physician once suggested my symptoms may just be “a load of B.S.” All of these were cases where doctors made a judgment before I had hardly had time to utter a word. They saw a young female patient and heard the words “mystery illness” and that was all it took for them to make up their mind about me. After many years, I decided I had to my own research and was able to narrow it down to what I thought may be the problem. With the help of an exceptional neurologist I was able to confirm that I have a rare genetic disease.
Symptoms you’ve experienced
I have had chronic pain, headaches, problems with my joints, hyper-mobility, GI issues, seizures, full body dystonia (this is a type of movement disorder that causes involuntarily twisting movements and muscle contractions), serious vision and balance loss, cognitive issues, memory loss, hormonal disruption, POTs and dysautonomia
What do you take for pain/nausea etc?
Currently I don’t take anything because I have found that for me personally, a lot of pain and nausea meds make my GI symptoms worse and I feel like it just perpetuates the problem
How has endometriosis / pcos/adenomyosis impacted your personal life?
If you do not see your diagnosis listed above please write it below!
I have a condition called Wilson’s disease. It’s a genetic mutation that affects copper metabolism. Basically I am not able to eliminate copper from my body so it accumulates, becomes toxic, and damages my organs. It can affect different people in different ways but my case has most severely impacted my brain and spine, so many of my symptoms are neurological.
My symptoms, like the dystonia, can be very noticeable and I’ve struggled with feeling embarrassed or like I should be trying to hide it. It’s been very hard to find a sense of community and I have yet to find anyone else who has experienced something similar. I’ve gotten a lot of weird looks and people have even laughed out loud at me before. I sometimes use an ID cane because of my vision loss, which also draws a lot of unwanted attention. Even though it helps me a lot, I avoid using it as much as I can get away with out of fear. I have found that I get approached much more often by predators when I have my cane because they see it as a sign of vulnerability. Because of all of this, I don’t go out a lot and have ended up pretty isolated.
What type of diet do you follow?
I eat a high protein vegetarian diet that’s low in copper
What’s a taboo that you wish was talked about more?
Depression/anxiety caused by medical problems. I feel like when people suspect that a person with medical challenges may be struggling emotionally they are more likely to assume the physical symptoms are a result of psychological problems. Its not uncommon to be accused of being dramatic or faking your suffering for attention. But, far from being “dramatic” I have put so much time and energy into trying to hide the fact that I’m disabled. I downplay it as much as possible. I only go out on the days my symptoms are at their least noticeable. I want very badly to just be normal and blend in.
I wish people understood that depression and anxiety are often a byproduct of chronic illness. Medical problems can be severely life disrupting and factors such as constant pain, isolation, rejection, and lack of freedom are bound to cause emotional distress. It’s a natural response to a terrible situation that no one should ever have to experience. Regardless of the cause though, mental health challenges shouldn’t be anything shameful and are never the person suffering’s fault. I wish people with chronic illness were free to talk about the emotional impact of living with a health condition or disability without people using that to try to invalidate their pain.
Any other comments or questions. What would like the world to know ?
I spent over ten years being told by doctors that I should give up, or that it was “all in my head”. I couldn’t believe that doctors, the people who were supposed to be on my side fighting for me, would say these things. It was so discouraging, I eventually started wondering if maybe they were right and I really was crazy. After all, how would you know for sure? It left me feeling terrified about my future and I lost hope that I would ever recover. But despite that I kept going, I kept searching, and it saved my life. It turns out the condition I have is just incredibly rare. It was a long and grueling road but I will be eternally grateful that I stuck with it and my advice to anyone experiencing something similar is to KEEP GOING no matter what happens and no matter what anyone says to you. Your life and health are worth it.