Sunday, August 27, 2017

Valued Voices #6: Chanel White - The Tube Fed Wife


Chanel White is a 25 year old woman from Seattle. Shortly after getting married to her high school love, she was diagnosed with Systemic Scleroderma. Scleroderma is a rare, autoimmune disease where the connective tissues in your body literally begin to progressively harden.  In those with Systemic Scleroderma like Chanel, typical life expectancy is 11 years from onset. She had bone marrow transplant a little over 230 days ago in an attempt to slow her progression. She is also a keynote speaker, blogger, and most importantly, fellow lover of cats. You can find her Facebook page to keep up at www.facebook.com/thetubefedwife.

Chanel and her husband Noel at their wedding
Chanel's kitties, Calliope and Nova


Hi Chanel! Before we get started, I thought I’d let you introduce yourself and tell us a bit about what you do, and what you’ve been through in the last few months.

Okay, well let’s see, I’m Chanel White. I am 25, almost 26 this month, and for the past couple of years I’ve been battling Autoimmune Disease (Systemic Scleroderma), and going through some very intensive treatments. Seven months ago I had a bone marrow transplant, which unfortunately I since relapsed from. I saw a lot of awesome improvements after years of immune suppression and chemotherapy and all of that jazz that just didn't do anything. So the bone marrow transplant, I really did see a lot of improvement but unfortunately symptoms started to reoccur in about 5 months or so. So I’ve restarted some kind of lower dose treatments, and I’m back on a feeding tube, and just kind of doing the daily grind again. And unfortunately my blog and social media has been on the back burner because I started working, and stuff got good. So now I’m trying to manage chronic illness and work which has been a little too much to tip the scale between that and social media so, there’s the really long-winded explanation. 
pre-transplant and post-transplant

Chanel with her bag of stem cells

When you started sharing your story online, did you ever expect for it to blow up like it did?

No, not at all. I honestly just started it so that I wouldn’t have to call like, 18 different grandmas to tell them, “This was the test result.” So honestly I did it for very selfish reasons. Cause I just didn’t want to have to call my whole family. I just wanted to be like, “Quit asking.” Or if I was at church when people were like, “Oh, how’s it going?”, I didn’t want to explain to them “Life sucks.” I just wanted them to read it on a blog, so I wouldn’t have to tell a bunch of people. And people started reading it that weren’t my family and I was like, “Oh, this is weird.” And then I realized I could actually make an impact on other patients and kind of help them through their journeys by showing them they weren't alone through my journey. And I just started doing more of community outreach, as well as telling my story, which worked out really well, because it connected me with a lot of awesome people.



So what’s it like for you to be a public figure? Have you had any negative experiences?

Oh yeah, I mean that comes with the territory. Like when you’re sharing your life, there’s always gonna be people who just feel they're entitled to your life when you share it. So you know, if you put it out there, you’re also putting it out there for criticism and for conspiracy theorists, and also people who think you’re like Jesus.

So I’ve definitely had negative experiences. I’ve been stalked a couple of times. I’ve had death threats. I’ve had people who legit think I faked my entire bone marrow transplant, which just cracks me up, because I do not have the money to hire all those fake nurses. When you get like, 23 million views, there are going to be people who are like, “You should die.” Okay, cool, thanks bro, I’ll work on that.

There was only one that really hit close to home with me, and it was when this woman really in depth started contacting places that I freelance write for. Because to be fair, she honestly thought I was a fake. And there’s nothing I can do. I share very openly, and very honestly, and I understand that my journey is crazy. Like, I’m the first one to know that it’s crazy. But unfortunately this is my real life and some people just don't get that. So yeah I’ve definitely had negative experiences but I think the positive outweigh the negative.



What do you find some of the most positive parts of being a public figure?

I think just the connections I make, number one, because I’ve met some of my best friends through being a public figure. I think knowing that I am making a difference, like I’m not just gonna be a shout into the void. Someone in their life is going to remember me and remember my journey and it has made an impact on someone. And that means a lot to me, when people message me and say, “Hey, you’re the reason I got out of bed today”, like I think it’s really cool. It’s also kind of weird, but my story is doing something. It means something. So that’s kinda nice. 



What has it been like sharing the process and aftermath of your bone marrow transplant? Are there ever things you don't want to share?

I feel like I’m pretty open with everything. There’s not really a lot that I feel like I don’t share. I think the thing that I hesitate to share, and I think this is a theme throughout any kind of treatment that comes to an end, is that you don't feel happy when something ends. You feel like, almost unsatisfied. Like, I know when a lot of people finish chemo, or when life starts to go back to normal, like you’re done. Your time off from work is over, and all of the sudden real life starts, but you're not really that much better. There’s a lot of anxiety that comes with that. And you were so accustomed to living life on your own terms, and your illness dictated your life, and now suddenly an employer is dictating your life, and you can’t just sleep in anymore. I think maybe that’s the thing that I hesitated to share because people will think, “Oh, you’re a whiner. Everybody works.” But like, when you've been accustomed to being in treatment for so many years, you really go into a deep depression when you have to go back to work, because you realize your time is not your own. Not that it ever really was, because illness dictated it, but still, it’s different. It’s a hard concept for someone to grasp that hasn’t gone through treatment, and haven't had years of life just like, sitting on the couch. So it’s definitely a rocky transition going from treatment back to real life. 


Since losing your hair after the transplant, I know you’ve tried some wigs. Which one has been your favorite?

I have a rainbow wig that I really like that I wore for my 100 days post-transplant. But my favourite everyday wig is one that looks like that looks like just really typical wavy, brown hair that’s kind of shorter. It’s like bob length. Because the long ones, no matter how much I love being fabulous and having long hair, they get in the way. I was never really that into wigs though because they were itchy and hot, but I wore them for special occasions. 

100 days post-transplant


Did strangers treat you differently in public the more your illnesses started to become visible?

Yeah, I think so. You know, it’s funny, because before my transplant, and before my first year of chemo.. before I ever lost my hair, I was on oxygen, and a feeding tube, and I had my port accessed at all times. Like I was visibly ill, and people really did not care. However, the day that I lost my hair, all of the sudden people cared. And that to me was really frustrating, because I was like “Wait a minute. You didn’t care last week when I was obviously still extremely ill, toting around essentially life support. But suddenly I lost my hair and now you care?” So that was kind of a shock to me, to realize where empathy kind of stems from, and it really is all about being bald. 

Chanel in June 2015


Chanel in September 2015
I had a lady one time when I was standing in line at a store, and it was right after I had lost my hair the first time, and she purchased my whole load. And she was like, “Oh honey, I’ve got it. Merry Christmas." And I was not accustomed to that. Even being on oxygen and with the feeding tube, being visibly ill, nobody would really treat me different besides maybe they would hold the door open for me? But then I lost my hair and all of the sudden some people were like, “Let me buy you this”, “Let me do this for you”, “Have the right-of-way in traffic.” It was very odd. It’s just so weird. 



It really kind of just shows me the stigma of society that cancer is the only important thing. Because obviously people associate being bald with cancer, even though chemotherapy is used for a plethora of things that are not cancer, it’s just the most common. And so suddenly people think you have cancer and they treat you like royalty which was odd to me because I had obvious medical devices, but it’s only when I started losing my hair that people really jumped on the “Oh please let me pity you” bandwagon. Which is not what I was asking for. So it was very odd. When you go from invisible to visible illness, people definitely treat you differently, but there are like, different levels, which is weird, that I didn’t realize. Cause people treated me a little bit different when I was on oxygen. They treated me a little bit different when I was attached to my port or whatever, and then when I lost my hair it was a whole new ballgame.

It’s also especially awkward explaining to people that I don’t have cancer, but I was going through chemo, and all of the sudden they didn’t care anymore, and I was like “Oh, thanks, that’s really nice.”

Chanel in February 2017

What’s the most irritating or annoying comment you get regarding your illness?

Probably “Get well soon!” Cause people don’t really understand that that’s not how it works. No, but in all reality, it’s more something like trying to compare an illness, like “At least it’s not cancer.” Because people don’t understand illnesses are not comparable and they don't go up on a venn diagram where this is worse than this. It’s probably just the things people say trying to be nice, but it’s actually just more harmful to the patient. Actually, probably one of my least favorite things people say since going through my transplant is they’re like “Oh, but it wasn’t a REAL bone marrow transplant” or “Oh, but it wasn’t REAL chemo.” Because again, people only  associate things like these to cancer. So they think that what you’ve been through isn’t the exact same thing, even though it’s literally the exact same thing to a tee. So that was very frustrating, because somehow people find a way to belittle your treatment just because it’s not what they associate it with.

Chanel in January 2017

 
How do you feel about referring to your illness as terminal?

I mean it’s a true statement so I don’t have anything against saying that, but I think there are people who run around and say it like it’s some prize to be won, as if they were the sickest person. I know an acquaintance who will say it every chance she gets. On my medical paperwork I have terminal as a diagnosis code. My doctors refer to my illness as that. And yes, I refer to myself as that when someone asks my prognosis, or I’ve made posts about what it’s like to live with a terminal illness. But I don’t like to overly draw attention to that fact, even though it’s true. Just because I think there’s a lot of stigma around “terminal” and what it means, and people don’t always realize that terminal doesn't always look like someone dying in a hospital bed.  So I’ll use it if I need to because it’s factual, if I’m referring to my prognosis. If not, I won’t say “Oh, I’m terminal”,   I’ll just say that I have a chronic illness.



So you have your own support group that you started at home. What kind of ways would  you recommend to others who want to start their own support group in their city?

You know, I actually started that support group through a hashtag. So I just hashtagged #SeattleSpoonies on a bunch of stuff, and then looked for other people who may have used that. And then was like “Hey, if you’re in my area, show up.” And people did. I was so surprised. So I would say just really work on having a strong social media presence, and then work on community outreach through hashtags on your social media.

Chanel's Seattle Spoonies meet-up group

And lastly, how are you doing now? And what are your current goals and plans?

I mean, I’m doing okay, apart from a few organs deciding to re-crap out. Right now it’s just juggling the doctors, and a job. But luckily I’ve got a really chill job that’s very flexible. They let me work from home when when I need to which is great. So I’m basically just working on keeping my head above water, honestly. It’s hard, because when I was on disability and I was on my own schedule I could just say “yes” to everything. And right now I realize, I can’t say yes to everything. So I had to turn down a really awesome opportunity to keynote which kind of broke my heart, but dealing with health and a job has been a little tricky. But I really just want to live in the now, and I just want to move forward. 


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