Chanel White, age 23, is living with a rare chronic disease that slowly hardens her skin and organs. (Photo courtesy Chanel White)
By Chanel White, as told to Amy Rushlow
I was diagnosed with systemic scleroderma right after I turned 20, just a couple weeks after my honeymoon, in October 2011.
I had never heard of scleroderma before the doctor told me I had it. Scleroderma is an autoimmune disease where the body produces too much collagen. It’s as if someone is pumping concrete into your body.
In systemic scleroderma, the collagen not only builds up in your skin and your vascular system, but also your connective tissue, the framework of the human body. If you didn’t have connective tissue, you would be like Gumby and you’d just fall apart. If you have too much, like me, you basically turn into a living statue.
The disease is rare — fewer than 100,000 Americans have the systemic form — and there is no cure. You could live five months or you could live 20 years. But based on how fast I started showing symptoms, when I was diagnosed, I was told 10 years would be fortunate. That was three years ago.
In that time, I’ve realized that something so extremely broken can still be so beautiful. I’ve learned that there is joy in letting go of what you can’t change, in letting go of what you believe your life was intended to be, and instead accepting and celebrating and revering all that it gives. I can’t do any more that my body will let me do and I have to accept that. Once you do that, you can find the beauty in a body vandalized like this.
A Day in My Life
In the media, you see stories of people who are doing all of these amazing things when they are sick, and honestly for me and many others it’s not that way. There are lot of naps, a lot of doctor’s appointments, a lot of medication taking, a lot of being too sick to do anything. I think people aren’t as interested in that; it’s boring, but it’s the reality. Illness is not a glamorous existence, and it’s important for people to know that.
When I get up in the morning, there’s just a lot of pain. There’s always a fresh wave of pain when I wake up. It’s just a realization that, yep, this is your body, this is what you’re living.
My day starts with a handful of pills, a bunch of liquid supplementation, and getting my tube feed started. I take 28 different medications a day, each multiple times a day. I am overproducing collagen in my digestive tract, and so essentially my esophagus, my stomach, and my bowels are stone. I can’t swallow food, and my stomach doesn’t empty. It’s like trying to drop nutrients into a rock. Everything is paralyzed.
I’m hooked up to tube feeds for 14 to 15 hours a day. The nutrition runs through a pump into a port in my abdomen. My stomach can’t handle too much at once, so it has to go into my stomach very, very slowly — about two ounces every hour.
Typically, I have anywhere from one to three medical appointments a day. I have a port in my chest for chemotherapy infusions. I have iron infusions every five days. I can have up to 20 appointments a month. It’s overwhelming. There’s not a lot of time to yourself when you’re sick.
Life isn’t very glamorous. There’s a lot of Netflix watching and napping and puking and feeling horrible. There’s also lots of talking to friends on Facebook, and blogging when I feel well enough. I live in pajamas. I probably own more pajamas than I do clothes.
On social media, I will post pictures of me smiling and wearing makeup when I do get out of the house. I don’t want people to misinterpret the illness. But I also want to capture the moments where I’m enjoying myself, because they won’t happen often. I think it’s important to show that you can still enjoy life in a broken body, but it’s also important to have people understand that this one picture of me smiling is not me, it’s the face that I put on. Those are the rare occasions that I try to enjoy when I get them.
A Sudden, Shocking Diagnosis
I started having symptoms just before I was diagnosed. It was almost one of those overnight things where you look down and just stare, wondering “what is happening to my body?”
My hands would turn this horrible shade of violet purple, and they would go completely numb. I never thought much of it; I just thought my hands were cold. But I wasn’t cold — this was happening in a 70-degree room. After a few weeks of that, I started losing hair, I was tired all the time, and the tips of my fingers were starting to look kind of weird.
One day, I looked down and I thought I had burnt my finger cooking. It looked like I had just sat my finger on a hot grill. It was black and scabby, and horrendously painful. Every time I touched it was excruciating. It didn’t go away and wasn’t getting better, so I finally went to a doctor.
He took one look at me and told me, “You have scleroderma.”
Typically, a scleroderma diagnosis takes years. Many people are misdiagnosed with lupus or other autoimmune diseases. I walked in and literally didn’t even have a chance to say hello before the doctor was like, “You have this horrible disease.” I didn’t know what to do. He gave me pamphlets to read, tons of medication to pick up from the pharmacy, and a new way of life to start. I started chemotherapy pills and immune suppressants right away. Immediately after that appointment, it was a drastic life change.
My fingers are tight and swollen; I can’t straighten them. They get these sores — that word really doesn’t do them justice — they’re ulcerations, dead skin and tissue. It’s because that concrete is not only harming my skin, but it’s also crushing my vascular system.
A lot of people when I first received the diagnosis thought it only affected my hands. They’d ask, “How are your hands doing?” And I kept trying to explain to them, “Yes, you can see that my hands are purple, you can see they have sores on them, but that’s also happening to my organs.”
Becoming My Own Casket
Since my diagnosis, it has been a snowball of one problem after another. In December 2014, I was walking up the stairs to the mall and collapsed. I was wheeled out and rushed to the emergency room. My body had just stopped. I couldn’t walk, I couldn’t lift my head — I was lying in a hospital bed with a machine breathing for me. I was basically awake for a month but couldn’t do anything on my own.
I don’t have much of an immune system, so I get sick very easily. I ended up with meningitis, C. diff (Clostridium difficile, a bacterial infection), and spinal fluid in my brain. It was to the point where they basically told my family, “Say your goodbyes.”
I recovered, obviously, and went to rehabilitation. I learned how to walk again with all of these people who just had their hips redone.
In the past year, the disease has started attacking my respiratory muscles. My diaphragm functions at about 18 percent, so breathing has become a difficulty. I carry around oxygen because if I talk for a long period of time, or walk for too long, I don’t have the capacity to get my diaphragm moving and expand my lungs. This disease truly damages every inch of you.
I’m grateful that my entire family lives nearby. My number one supporter is my husband of four years.
We were high school sweethearts. I was a competitive gymnast and had a scholarship to be a vocal performance major. We were going to go to college together. We had goals. Then things changed, and he has been so adaptive and so supportive. Every hospital stay, he slept in that uncomfortable chair. I’m in a hospital sometimes for thirty days.
Chanel White with her husband, Noel White, who she calls her number one supporter. (Photo: Chelsey Shaw Photography)
I absolutely would not be able to face this battle without him. I’m not going to lie and say I don’t have breakdowns and I don’t get upset that I’m dying at the age of 23. There are times when I can’t be strong; it’s just not in my power at that moment. He is able to look at me and just say, “It’s okay.” Not that it’s going to be okay because we both know that it’s not going to be okay. But it is okay where we are at. We are together and he’s going to be there.
Learning to Let Go
This illness has opened my eyes to the world. Before I became ill, I really didn’t have that perspective that life can be over in an instant. I never really had any major tragedies growing up. I never saw a lot of deaths. I never saw a lot of illness. And now I’m thrust into this world where there is constant death and constant illness. I’ve watched friends die. I’ve watched just people go through suffering that no human should ever have to endure. I realize now that life is such a fragile thing and it can shatter in an instant. Once it does, you won’t be able to put it back together — you just have to move on as a changed person.
I feel that I am a completely different individual since I became sick, like it opened this part of me that I just didn’t know really existed. I’m stronger, more resilient. I understand that I need to stop and take time to do the clichés, like smell the flowers, take the longer journey, and just enjoy the little things. Small victories are important. I am happy if I can have a bed. I am happy if I make it to the couch. I am happy if I am able to drink a small amount of Gatorade and not throw up.
People might say that I learned not to take things for granted, but it’s not like that. I don’t think people are taking things for granted if they don’t understand. I don’t think someone is a bad person for eating a cheeseburger and not enjoying it. When you’re sick, it’s a different way of life. You learn to accept it. You learn that, wow, being able to eat a cheeseburger is really great.
It’s not about whether you take things for granted or not. It’s about understanding and accepting the life that you have. And making it the best you can. And celebrating what it is.
Chanel White blogs at thetubefedwife.blogspot.com.