Sunday, 19 June 2011


A few years back I was diagnosed with Interstitial Cystitis, also known as Painful Bladder Syndrome.  With a name that perfectly describes the disease, I suffered years of tests (as it's diagnosed through exclusion), worrying if I had an STD ( how would I ever have guilt free sex again), or even worse...cancer.  As they're're still suffering.  When I was finally diagnosed I felt a rush of relief.  And when surgery was suggested, I thought great, let's do it and move on with life.  But no, the surgery is exploratory and there is no cure for this disease.  The only thing you can do is change your diet, to avoid flare-ups, and go on meds to alleviate the symptoms when you do have flare-ups.  OK, not so bad.  But wait, there's a catch.  The number one side effect of the most useful and proven drug... hair loss.

For the last couple years I was doing pretty good, learning what I could and couldn't eat (don'ts; ice cream, chocolate, citrus, coffee, soda), going on meds for a week or so to curb the flare-ups when I hit a food that didn't mesh with the disease.  But last winter I got the Alien Death Plague from hell. I was out of commission for nearly a month (kinda of wonder if it wasn't The Swine Flu), not able to cook properly and inhaling vitamins (which I learned I can't take either) like it was my job.  Of course, I had to go on my meds since my bladder was acting up with the worse flare-up since I'd been diagnosed.  I couldn't pee without crying.  So, I started double dosing (with doctor's permission).  I was able to pee but ...I lost a lot of hair. 

Don't get me wrong, I didn't lose it to the extent that I had to wear a wig, or even a hat (which I've heard that some people do on this medication), but my hair thinned out significantly and I had bald spots all over, mostly round my temples.  My signature hair style (The Pouf, to those who know me) was out the window, and I was depressed.  Not only was I losing hair, but I had to keep taking my meds because my flare-up just wouldn't let go.

After months of feeling like shit, wearing my hair down and wondering when I would get a break, a little light bulb went off in my head.  'Who cares?' it said.  'Why are you so fixated on your looks?'  Well...good question.  I spend everyday meditating, working on my spiritual self and here I was letting a little hair loss rule my feelings and my life.  How was it that I became this egotistical person who only cared what people would think?
Society that's how. 

Every single moment of every single day we are all bombarded by images and messages of what's hot and what's not.  You should look like this and then you can achieve anything.  You can be rich, famous and loved by all.  There's something wrong with you if you don't have beautiful hair, or male/female patterned baldness.  God forbid your hair is not full or shiny or styled like the movie stars.  We have shampoo, that promises to make your strands just the way you want, (even though we all know it's just soap), products to make it straight or curly, this color or that, we have clinics to replace it if it's gone and therapy to help you deal, if we can't. Because the way you look is more important than the who you are. 

Who can keep up?  I know I can't.  So after a very brief moment considering a visit to a dermatologist...I let it go.  My hair is not Rachelle.  My sense of self is not rooted in my looks, it's rooted in my personality, my spirit that shines through regardless.  You are what you think.  So I stopped thinking about it, obsessing about it, spending hours in the mirror for weeks on end wishing and hoping for a sign that it was growing back.  (I thought of cancer patients who lose all their hair.  Not only are they dealing with a deadly disease that is sucking, literally, the life out of them, but they have to deal with people...being now what I mean) And low and behold, it started growing back.

My wish with this journey is only that society stop taking advantage of people's insecurities (and the fact that most of us just don't know any better) to make a buck.  Wouldn't we all be better people, living in a more tolerant world, being nicer to each other and reaping what our spirits are meant to learn?  And I do hope you take away a clarity from my journey that you didn't have yesterday.


  1. Love this post because until we decide to break the stigmas from above, we will never grow as a people towards something better for ourselves. I'm sorry you have to go through this pain, but am so honored to have you as a friend. I hope your strength can rub off on others since there are so many other things out there that deserves people's energy. It is horrible when people worry about wrinkles or uneven skin tone, or in this case hair loss. Our bodies aren't meant to last forever - but our souls are. The memories of a person are what stick with us through the thick and thin.

    Keep up the good fight and prayers/good wishes to staying healthy.

  2. Rachel, I just "found" your blog via Facebook (I am also in publishing). I was diagnosed with IC in 2006 after months of pain and discomfort. Thankfully I lived not far from one the country's experts, so was diagnosed fairly quickly. About a year from the initial start of symptoms I had surgery and thankfully for me it worked well. But I, too, take Rx, and I too have thick, long hair and when it comes out in my brush I panic.

    I have only met one other person with this illness, until I saw your post. I am so sorry for what you have gone through, because I know how painful and isolating this can be. I found some comfort in the IC organization website and participated in a research study. Thankfully, my IC has stayed in remission, but I still take Rx and have to be vigilant in avoiding triggers.

    In Feb. of this year I had a tooth abscess that was seen by a doctor and treated with antibiotics but overnight became facial cellulitis, which I struggled with for about six weeks. The dr. said it was "life threatening" and I worried I would lose part of my jaw/cheek/chin. I was so worried because, as I told my husband, "I was just starting to like my face!" (at 55). Thankfully, I healed, but I can relate to that feeling of re-evaluating what really matters. During this time I wrote a five part blog series on pain, with input from many supportive people. It is on my blog, Appalachian Morning.

    I wish you all the best with your health and look forward to following your blog and book reviews. If you ever need more books to review, just let me know if any at interest you and I'll be happy to send them to you. (I founded the company.)