You Won’t Believe the Story Behind These Two Faces

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Why There’s More Than Meets the Eye

When you look at these two pictures, what immediately runs through your mind? I’m guessing words like beautiful, young, healthy, and vibrant were adjectives that popped into your head when you viewed the woman on the left.

Does seeing the woman on the right conjure up words like sick, contagious, repulsive, ugly, and scary? Our brains make snap judgements based on appearance thousands of times each day. How often do we stop and take a moment to reflect on those initial impressions and learn more before we judge? Chanel is the woman on the left and I (Lisa) am the woman on the right. Chanel and I have never met, but began reading about one another on our respective blogs, which depict our lives with chronic autoimmune disease. I hesitated reaching out to Chanel, but finally built up the courage and sent her this message:

Hi Chanel-

I’ve known about you for a while, read your posts, loved your writing, admired you greatly, cried for what you go through…. but was terrified to contact you. Why? Because I felt tremendous guilt that I have lived with my chronic disease for 30 years, have two children, a husband, a career, and my disease is currently stable. How could I possibly have the nerve to contact you? I couldn’t think of anything to say that didn’t seem like I was throwing in your face that I’m fortunate to have a “better” diagnosis.” We are only in touch at all because you commented on something I posted. Please respond if you’re interested in talking.

Best,

Lisa

Here’s what Chanel wrote back:

Hi Lisa!

Wow, first let me say how brave you are to write this, and express your honest feelings! I was completely speechless when I read your email, for a reason you may not believe! 

 Lisa, you are so amazing! And I want you to know that your journey has inspired me many times! I started reading your blog from your very first post and was amazed by the trials you have overcome. I kept my distance because I felt you had endured so much more than me, and couldn’t possibly relate or want to talk to someone so young and inexperienced with disease! It’s so funny the perspective we build in our heads about others and their view on us!

Let’s Talk Soon,

Chanel

Hi Chanel-

Never in a million years would I have ever imagined you could feel that I have endured more than you! Besides, as I’m sure you’ll agree, it’s not a contest, and if it were, nobody would want to be the winner 🙂

Lisa

During a brief phone conversation, Chanel explained that at the age of 20, just a few weeks after her honeymoon, she became very sick. Three and a half years later, Chanel’s disease has taken a catastrophic toll on her major organs. She suffers from serious vascular, digestive, respiratory, and nervous system involvement. She has a feeding tube surgically placed in her abdomen, a central line in her chest, uses supplemental oxygen, and is admitted to the hospital every few weeks. When I asked Chanel about her future she said, “I’m going to take the punches as they come. Who knows? Maybe they’ll come up with a drug that will be my drug- the one that’ll work for me.” I am in awe of Chanel’s strength, courage and positivity. She has so much to teach the world.

I almost missed out on the privilege of getting to know Chanel because I was afraid to reach out. The universe puts up enough hurdles for us. Why do we create additional barriers based on fear? How many times did you miss out on an opportunity to cultivate a relationship because you were afraid, or thought you couldn’t possibly have anything in common?

Chanel and I have a lot in common, we both suffer from the same autoimmune disease; scleroderma. We’ve been impacted differently, but we’re both warriors. We each thought the other was “worse off” and felt uncomfortable reaching out. How many cancer patients who haven’t lost their hair feel uncomfortable approaching a bald cancer patient? How many wealthy people feel the same way about approaching a poor person? Whether it be a difference in social status, religion, ethnicity, or appearance, this scenario plays out constantly in our society.

It’s human nature to make snap judgements about people and gravitate toward people who look like we do, both literally and figuratively. Even so, the next time you meet someone who you deem too fat, skinny, old, young, loud, quiet, pretty, ugly, or spotted, remember the story of the two faces you just read about. Think about the beautiful young woman and the weird-looking spotted lady, and then, take another look:

 

Disclaimers:

  •  This is the first time I have ever publicly shared a photo of my bare face. You would think I might want to take baby steps, rather than just throwing it out there on the internet. Nope, I say go big or go home. Some have warned me against doing so, saying the internet trolls are going to have a field day. I am putting my faith in humanity and hoping this will get more positive reactions than negative. Please consider sharing this with a nice comment to prove me right.
  •   Yes, concealer is my best friend. For more on that, read this.
  • To be clear, I know my battle with makeup is not anything in comparison to organ failure. But like I said, it’s not a contest.

To learn more about Chanel’s life with scleroderma check out her blog here 

To learn more about Lisa’s life with scleroderma check out her blog here

 

Embracing Inner Beauty, Overcoming Obstacles, Uncategorized , ,

31 Comments »

  1. This post left me in tears. My heart breaks, for all of us, in so many ways. Lisa, you have educated more than you realize with this posting, I am sure. I, too, am on my own journey with Scleroderma. Mine includes minimal facial changes, medium amounts of PH and ILD. But we’re not competing, no one wants to win, and all we do care about is seeing continually better treatment options until there is a CURE for all of it! Thanks to both of you for sharing.

    On a side note, I briefly got to chat with Chanel at Conference this past weekend. She is absolutely the poster girl for “You Don’t Look Sick”!

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  2. You are both heroes to me! I have reached the ripe old age 73( August ) and the worst I have had is asthma and emphysema . I learned long ago not to complain.
    One takes it day by day, and Just keeps keeps on going. But you two have taken it to the nth degree! I so admire you both. Fingers crossed a cure for that horrible disease will come soon. Lisa if you remember I am Jolie’s mom. I think about you every day. Love you both❤️❤️

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  4. Thank you both so much for sharing! I have scleroderma as well & have gone to support groups and events and always leave feeling guilty for being so “healthy”. I have a tendency to completely downplay my own symptoms to anyone who has much more involvement then I. Meeting or talking to others does always put my own issues into perspective & I always appreciate that!
    Thank you so much for being honest!

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  5. Lisa,
    You crack me up! Let’s be superficial for a moment…
    Your face isn’t ugly or scary or anything! You are way too hard on yourself. Your hair is to die for. There are many days I wish I was too skinny like you say you are! We all have our own perceptions. You are beautiful inside and out. You keep putting it out there girl? You rock!

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  6. Thanks for sharing a lovely story with us. Lisa, you are beautiful inside and out. Even though you’re my friend and I’ve known your story for some time, I am still amazed at your courage, strength and positive attitude every single day. I am glad you reached out to Chanel. While you have Scleroderma in common, the lessons of self esteem, positive self image , strength ,wit and many others can be learned by many women and girls.

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  7. You both are so awesome .. I’m relatively new to the disease ( fightening for a formal Dx ) tested + Ana and Sco-70 with multiple symptoms . It’s scary as hell . I’m just so glad to have such wonderful knowledgable people . Thank you so very much

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  8. You ladies are both equally beautiful, phenomenal, and an inspiration to us all. For this I thank you both, and wish you the best life has to give to you, and thank you for what you give to us.

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  9. You are both very brave to share your illnesses with the world. I have learned things I never thought I would. A broken humorous is nothing by comparison. At least it will heal and no one can see the pain!

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  10. I loved reading this story. I attended the conference also last weekend. I am also a warrior that does not have the visible signs of scleroderma, but my heart and now my lungs are being affected. I try to forget I have this terrible disease but it holds me back! I am only 46 and had to sell my motorcycle because my raynauds is too bad to drive, (I am not a back seat women!) ha ha! I also have vertigo and balance issues so trying to rollerblade and ride a bicycle with my kids is out! I am not trying to just complain but I am sooooo mad at this disease!!! Still, I do my best, move a little slower to catch my breath and keep on going…….. I am the active parent who has coached different sports every year, run and jumps in the pool and play games and plays tag at the splash park!! Having these recent episodes just makes me mad!

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  11. I loved reading this story you’re both an inspiration . I was diagnosed with systemic scleroderma almost 2 years ago I don’t have any outward signs of being sick it’s all internal . I can’t walk to much so I feel bad when people stare and wonder why I have to use a motorized shopping cart in the store . it’s like nobody understands why just doing simple tasks wears me out and I’m constantly tired . so I don’t talk About my disease to anyone except my sister . anyways thank you so much for sharing your story with us

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  12. WOW. You are one strong woman and I congratulate you for raising your voice. I’ve had autoimmune disease for 30 years and our voice is our best tool for education. I know how hard everything has been and totally support your fight.
    Shelley
    thesickdays.com

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  14. Thank you for your courage in writing about this issue. I wasn’t aware of this disease and you have bravely been an advocate to help people be informed.

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