BlogHer recently had a writing initiative called “Letters to My Body” that yielded hundreds of journal entries from a diverse group of women, who wrote beautifully and from their hearts on everything from disability to self-acceptance .
A few months ago, when I was doing the research for a different article, I came across the statistic that approximately 25% of American adults, a third of women and a fifth of men, have no interest in sex, and that up to 33% of our population has gone a year or longer without a sexual partner.
I wasn’t that surprised. While waning activity may be caused by many things, including hormonal changes, stress, and fatigue, there’s another cause that’s rarely mentioned, or mentioned only in passing, and even then more as a psychological matter than a physical one.
What I’m talking about is the turn a body can take from being a thing of integrity — that’s healthy, intact, and consistent — into something that’s marred by disease, beset with problems, and unreliable.
Throughout my late twenties and into my mid-thirties — which some say is the prime of life — I was plagued by psoriasis, and not just a little bit. My skin was ravaged from scalp to ankles, with thick plaques that shed, and skin cells that grew at a hyperactive rate. Psoriasis is a devastating auto-immune disease with many treatments, and no known cure.
For a little over ten years, I lived the life of a modern-day leper. People stared at me with repulsion, and would-be employers turned me away at the door. Socially and personally, it was an extremely difficult time. As a parent, I felt bad that my children had to explain my disease to their friends. As a woman, I felt my prospects slipping away from me, and not just on the career-front. All the work I had done to find myself, heal my past, and understand my own sexuality seemed like a wasted effort — no fitness of mind or surety of spirit can make up for a body that’s covered in scales.
I remember an older friend in my teenage years named Debby who had alopecia, a disease that left her with no hair anywhere on her body. I would watch her get ready for work in the morning, carefully filling in her eyebrows with pencil, gluing on eyelashes, and brushing out her wig. Debby, who was in elementary school when the disease hit, was comfortable with her baldness, but went through the paces of covering it for those who were not. It was easier, she said, than always having to explain.
Debby didn’t go on her first date until she was in her early twenties, and by then she felt so anxious about ever finding love, that she married the first man who asked, and it was not a good match. He wanted a doormat, and maybe even chose her in part because he felt her condition would leave her feeling inferior. She might then need him more, and needing him, be more willing to accept his abuse.
I couldn’t fully appreciate Debby’s experience until my own encounter with a disfiguring disease years later. However, unlike Debby, I had a time in life preceding my disease where I truly felt the power of my body, and learned to love it, after unlearning all the shame that had been heaped on it since childhood.
Without those sunlit years, I don’t know how I would have survived the darker ones that followed. As it was, I ate myself into plumpness, taking solace in food. I busied myself with my children, and became downright obsessive about whatever work I was doing. I smoked way too much, refused to look into a mirror, and ceased to care what I looked like at all.
And then — poof — the psoriasis went away. Not just a short remission, but one that remains, with only a few scars left as a reminder. No miracle cure, no special reason, it just disappeared.
The Job-like curses that can effect life and sexuality are many. Skin, hair, teeth, muscles, bones…. the overall state of physical health can be fragile, and a sense of well-being can be elusive.
I didn’t participate in BlogHer’s letter initiative, but my letter would have been simple. “Dear Body,” I would have said,
“I am sorry that while you were trying to deal with skin issues, I decided to give up on you. I was really mad that you got a disease in the first place, and that you wouldn’t heal yourself quickly no matter how many UV treatments, shots, and tubes of medicine I gave you. I didn’t want to be your friend anymore. I didn’t even want to be see in public with you, so I distanced myself as much as I could, and treated you as if you didn’t have real needs, and didn’t exist. I promise that from now on, whatever life throws our way, I will not put you in the camp of an enemy, but treat you as the ally you are.”
I learned, during my decade as a leper, that more painful than any physical loss that’s experienced as part of a disease, is the loss of potential — some of which, at least, which is avoidable.
Disease or dysfunction can make you want to shut yourself out or off, especially when rejection is not just a fear, but a reality. To avoid the pain of being rejected or stigmatized, we can invent new ways to hide — and we can invite a whole new set of problems. One condition becomes two, becomes three, becomes a whole set of circumstances.
It is not easy to love a body that has betrayed us, but without that love — without nourishing and nurturing our bodies even when they fail us — we rob ourselves not only of healing, but of our own life potential.
12 responses so far ↓
1 allison // Mar 28, 2008 at 10:33 pm
Jane
You must be an old soul indeed.
I can hardly comment on the horrendous things you have had to endure.
Yet this beautiful person is here, sharing your wisdom and knowledge with us,
and perhaps( I like to think), the telling is a help to you as well.
2 jimi // Mar 28, 2008 at 11:30 pm
DEAR JANE, THANK YOU FOR SHARING YOUR PAINFUL SKIN CONDITION…PSOROSIS, AS YOU SAID,IS AN AUTO IMMUNE DISORDER..BUT ALSO CONNECTED TO STESS AND FOOD ALLERGIES. I AM HAPPY IT CLEARED UP. LOL,J
3 rose // Mar 28, 2008 at 11:45 pm
jane, i developed diabetes after my 2nd pregnany, and gained all sorts of weight, and when dieting didn’t make me lose it i was so depressed i just ate more. nobody wanted to be around me, i didn’t want to be around anyone. as the weight piled on, so did the pain, physical/emotional.
i had a good husband, but he couldn’t help me, and yeah i became sexless. our marriage fell apart and he left twice. i had all sorts of other problems due to the wight……at one time i was 260. that’s 140 pounds more than i weighed when i got married.
well, it took a very long time. diabetes really messes with metablism, but i slowly made it back to better health. never weighed 120 again, but am 160 and feel great.
it took a long time not just for me, but for my husband and others to heal too. my shutting everyone out was due to depression more then rejection, but it still hurt them. i was hurting too much to see that.
anyway, this is what your story brought to my mind, and i am glad that you share these things because i think a lot of people don’t get a chance to see things like this in print which only makes us feel more alone.
4 Sharon // Mar 29, 2008 at 1:09 am
Every time I read these three blogs I try to lose myself in computer games. Something (likely a lot of somethings) is speaking to me but I don’t want to hear it.
I too married in my teens - 8 months pregnant.
Good Catholic that I was then, I stayed long past the first slap. Too bad he didn’t throw my typewriter away. I may have gone sooner. I thought all was well because the three times he was physically violent were five years apart. After the divorce I realized the mental and emotional abuse plus the ever present threat of violence were just as bad as the actual violence.
In no way do I wish to excuse him, but I know I also played the part. That one we all learned in the fifties - treat him like a god and yourself like a dishrag.
He bragged that he was glad he’d married a woman almost as smart as he was. Years later it dawned on me this was not a complement. He graduated from high school only because I did his term paper.
Jane, you’ve given me much to think about once again and I thank you (I think).
Tell us, do you have a small beach house overflowing with books, a mahogany desk littered with papers, a tattered gray sweater, and dogs named Holden and Phoebe?
5 Ann Parker // Mar 29, 2008 at 8:09 am
If only there were a city dump for first husbands. Mine would be piled there with all the rest. The key words here Jane are “loss of potential”. I have never heard it said so well. Let us teach our daughters not to allow body image or anything else derail them. Let’s help them keep their potential.
6 freida // Mar 29, 2008 at 11:39 am
It’s not what you look like, it’s how you are treated.
7 Paige // Mar 29, 2008 at 9:34 pm
Isn’t it amazing what we as women put ourselves through? I don’t know if it’s the media, society or the nurturing we receive as little girls, but why do we have such self-loathing/bad self-talk/self-esteem issues? What’s ‘funny’ is that by the time we are in our 30’s and becoming the person we are meant to be, our beauty fades and our bodies begin to fail (and, in my case, I learned my (now ex-) husband was cheating). It’s almost like a cruel joke is being played upon us. But, alas, we grow and our character builds, but do we ever feel completely good about ourselves? I doubt I will ever feel good about my body (I mean, I remember weighing 101 lbs (a very long time ago) and thinking I better lose 2 lbs!). I have many friends, raised two really great kids and make a good living, yet if people heard my self-talk I think they’d be amazed. Maybe I had too many years of hearing, “She’s smart IF SHE TRIES” or “…such a pretty girl, BUT…” Yes, I am happy with who I am, who I became, but I doubt I will ever be completely comfortable.
8 Jane Devin // Mar 29, 2008 at 10:43 pm
Allison, sometimes I do hesitate to put these kinds of subjects out there, but I know that the more they’re talked about, the less scary it all becomes — like the feelings involved, or the possibilities of how experiences are viewed by others. I feel pretty healed, but yes, those fears are always part of writing and it does help to jump into them.
Sharon, I don’t have the beach house yet. I say yet because I don’t think I’ll ever lose that dream. And wow — I’ve done my share of term papers, and part of a graduate thesis, too!
Ann, it really is all about the loss of potential. Society does more than its share to limit individuals, so what we do to ourselves has to be carefully considered. I learned that lesson so late.
Paige, I got all the “Buts” and “Ifs”, too. Along with the “Too Much ______”. Sarah McLaughlin has a line in one of her songs, “there’s always some reason to feel not good enough and its hard at the end of the day.” I can so relate.
Freida, exactly.
Congratulations, Rose!
9 Kathryn // Mar 30, 2008 at 11:25 am
I for one have always thought we women are overly obsessed with our bodies whether young or old, in sickness and in health. When I was young and a dancer, I had a great body, but wanted to be recognized for my mind. Now that I am older, I want that body back and know it will never happen. I’m working really hard now to be in the Present, whatever that means. If my body aches, which it does more frequently, I try to acknowledge the pain, sit with it and as much as possible, make some space between me and the pain. It takes being really conscious and aware of the moment, and often I am not successful, but I have had glimmers of being Present and it makes me want more of that feeling it produces.
10 Ella // Mar 30, 2008 at 7:35 pm
Hi Jane
I read your post, and as a woman who has had psoriasis all my teenage years and (a lot less) now, this post was incredibly healing to read.
I wish I could have read this when I was 14 or 16, when I was hiding my scaly body and hating myself — but no matter. Thank you for sharing your experience and your thoughts.
Aw, Ella, you’re welcome! I’m sorry it hit you so young. It really is a devastating disease that can take so much away, and I hope they find a cure soon. -Jane
11 Patty G. // Apr 1, 2008 at 6:29 am
Dear Body,
In 1947 you came into the world healthy and bubbly, with the desire to conquer everything. As time went on you started to fail as you have Crohn’s Disease and needing a bathroom with in arms reach on endless days, weeks and years.
You tried to take my life away many times through malnourishment and pain. You even gave me a bag to wear for the rest of my life. You didn’t win, the little body born in 1947 is still fighting 40 years later! Thank you body for not giving up on me.
And there are no doubt many people who are grateful that you kept up that fight, Patty. I am! - Jane
12 mrs jones // Apr 1, 2008 at 5:23 pm
Loved everything you wrote, Jane. I have psoriasis, too–today a student noticed and again, I pulled my hand back up my sleeve to hide it. I’ve tried make-up to cover it up and it still doesn’t help. Nothing works and I’m afraid to try the prescriptions that may work, but list lymphoma as a side effect. And I’m single and would still love to find a partner–but what would he think?
I laughed when I read Kathryn’s post. In my twenties I used to think men liked me for my appearance and was uncomfortable with the attention I got from them, seemed everyone wanted sex, too–all the time. Now the reverse… would enjoy the “problems” of my youth tremendously.
Hi Mrs. Jones, have you looked into UV treatments? They worked for me, at least for a time. As for youth, sure, I wouldn’t mind having some parts of it back, but I so much more understand life than I did then, and I don’t miss all the confusion and frustration that goes along with being young. - Jane
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