Identity lost!

lupus fog on a MondayI have been thinking (that’s the trouble when you have so much time on your hands) a lot about health and identity recently as I struggle to understand and appreciate who I am and who I am becoming as a result of elements or my personality being eroded, hidden or exposed (I’m not sure which) by the antics of mr lupus.

I have even found myself asking the question if mr lupus was to leave me tomorrow who would I be? A very deep and soul searching question which would suggest that in some bizarre way I need him in order to identify myself and justify my very existence. But surely that is a ridiculous thought at best?

I’m not so sure; I believe (and I have had a long time to think about it) health and identity are inextricably linked but until you are living with something more intrusive than a cold or occasional headache, it is nothing worth thinking about. Once living under the umbrella of mr lupus (or any of his friends) you find yourself under the thumb of a dictator who decides what you think, do and see unless you make a conscious effort to do otherwise. And sometimes let’s face it we don’t have the required energy to do so.

The strange thing about being diagnosed with a long term condition (and that is peculiar to any long term condition and not just lupus) is the fact that in order to navigate your way successfully through the hills and valleys and over any obstacles that may stand in your way, you have to dig deep to find the courage, the motivation and the oomph (I’m not sure if that is a real word) to get moving before you can even begin to think about keeping going.

Your value, self worth and self esteem are at the mercies of a merciless dictator and not until you consciously raise your game and take steps to overthrow him (I seem to be using a lot of war language and that’s because I feel like I am in a constant battle) will you gain the upper hand.

I am fascinated by the health and identity topic, so watch this space as I gather my thoughts and connect with the thoughts of others; I think we may have something here! As I continue to move the cobwebs to get my thinking going here is something to mull over.

I came across this article by Mary Dixon Lebeau about lupus and self esteem, in Lupus Now magazine published by the Lupus Foundation of America.  and just had to share it with you.

Enjoy the read but more importantly ask yourself the question ‘who am I? and if you don’t like or can’t find an answer that is your challenge from me to you. For some of us it might take a lifetime to get a satisfactory answer but each step you take is one step nearer. Who you are is not defined by the activity of mr lupus.  John Perry Barlow put it beautifully when he said “Our identities have no bodies..” so who are you?

Self esteem skills how to stay upbeat when dealing with lupus
A pretty blonde with an engaging smile, Karon Beasley never had a self-esteem problem. She always prided herself on her slim, attractive appearance. A sun worshipper since childhood, the Woodstock, GA, resident had the tanned blonde look associated with a native Californian. She even did part-time modeling. “Some of my income depended on how I looked,” Beasley says. “I was never vain, but I did care about my appearance.”

So when Beasley was diagnosed with lupus and Sjögren’s syndrome in 1998, she immediately became concerned about how the disease and her medications would affect her appearance. “I was suddenly taking over 20 medications each day, and I wasn’t sure how they would affect me,” Beasley recalls.

Classic lupus symptoms, such as a rash on her face and chest, began to appear. Despite continuing her workouts, she put on 14 pounds as a result of the prednisone prescribed to control her lupus. Her face swelled, and she felt out of proportion. “I was aware of what I looked like. I would take pictures of myself and compare them to older pictures. It was difficult.”

Though it wasn’t easy, Beasley was determined to remain positive. “I realized that this was my reality now. I hated looking at my pill tray with the various medications, but I realized, ‘OK, that’s where I’m at now.’

“Most of all, I had to learn I was not my looks,” Beasley says. “I am still a vital person with a lot to contribute. I needed to focus on who I was, not just define myself by a disease.”

Bolstered by supportive family and friends, Beasley took measures to make herself feel more comfortable with her new look. After being forced to stop tanning because of sun sensitivity, she started to use self-tanners to give her skin some color. She cut down on sodium, which helped her battle the weight gain and water retention. When her hair thinned and darkened following chemotherapy, Beasley’s mother treated her to some highlights and a new style that flattered her “new face.”

“I had to start thinking outside the box,” Beasley says. “I was so determined to look my best and be my best. I didn’t want life to pass me by.”

But her favorite piece of advice has little to do with appearance and everything to do with being open to the opportunities life presents. “Never turn down an invitation,” she says. “You never know what doors will be open for you.”

Mind over Matter

It’s natural for the physical effects of lupus and the prescribed medications to get you down. “But it’s important to realize that body image and self-esteem are not synonymous concepts,” says Robert H. Phillips, Ph.D., psychologist and founder of the Center for Coping in Hicksville, NY. “You may not be happy with the way your body looks, but it’s up to you how much you allow it to affect your self-esteem.

“You can have a malar rash or prednisone bloat, and it’s unpleasant. But there are people who have the exact same side effects, and it doesn’t bother them or change the way they feel about themselves. Then there are people who have tiny, little side effects, and it blows them out of the water,” he says, adding that the difference is all in the way each person thinks about herself.

“If you don’t feel good about yourself, there are things you can do to change it,” Phillips says. “You need to become aware of the relationship between your pattern of thinking and your self-esteem.”

To develop positive self-esteem, you need to identify negative self-references, such as, “That rash looks disgusting,” or “I hate what this disease is doing to me,” he says.

“I’m a believer in realistic goals. It would not be a realistic goal for someone to say she is going to stop thinking negative thoughts. Instead, you want to teach yourself to recognize these thoughts will happen from time to time, and you need to catch yourself and work on turning them around,” Phillips says.

Weighty Issues

“Gaining weight was really awful for me,” says Mali Minter, a Green Bank, WV, Spanish teacher who was diagnosed with lupus at age 20.

Now 41, Minter recalls getting fitted for a bridesmaid gown soon after receiving her diagnosis.

“I had to tell the person at the dress shop that I had no idea what size I would be at the time of the wedding,” she says. A few years later, she begged her doctor to allow her to taper off steroids so she could lose weight for her own wedding.

Many women have a hard time adjusting to the weight gain that comes with taking steroids often prescribed for lupus. “I was always a slim person, but I went from 115 pounds to 155–160 pounds in about a month in 2002 because of the high doses of prednisone I was taking at the time,” says Samantha Williams, 33, of Fort Myers, FL, who was diagnosed with lupus at 18. “I became sort of a recluse for a while, because my clothes didn’t fit and I felt ugly.”

But Williams began taking positive steps to make herself feel better about her weight. She took up salsa dancing for exercise and began a regimen of healthful eating. “I try to cook more and eat out less, and if I do eat out, I order baked or grilled dishes with veggies, no potato or pasta,” says Williams, who has lost 25 pounds since making the changes.

Crowning Glory

Both Williams and Minter lost hair as a result of lupus medication.

“The loss of my hair hit me hardest,” Williams says. “When I was washing my hair, handfuls would come out, but I totally rejected the idea of shaving my head, because I based my beauty on my hair.”

Williams says she now uses a product called Nioxin® that is helping her hair growth.

“I have my ‘fair hair,’ ” jokes Minter, explaining that her father helped her choose a hairpiece at the Minnesota State Fair. Between the livestock pens and the corn dog vendors, Minter’s dad spotted a booth selling hairpieces and extensions and urged his daughter to buy a wig.

Minter’s sense of humor—and supportive family—go a long way in boosting her self-esteem. “I know it’s all a trade-off. Steroids do terrible things to my body, but the good they do is more important,” she says.

“I’ve always been outgoing, with no self-esteem issues,” she adds. “I’m not the most beautiful girl in the place, but I never disliked the way I looked.”

It’s a Guy Thing

Hearing you have lupus is always hard. But if you’re a man, the news presents a different challenge.

“A lot of men have huge problems with this,” Phillips says. “Not only are they experiencing all the changes my women patients are, but they’re also questioning their own masculinity, as lupus is too often considered a woman’s disease. Only one in nine [people with lupus] is male.”

Phillips says he encourages his male patients to focus less on gender and more on the ways lupus affects their own lives. “Make it a strategy for improvement, not a comparison to women,” he suggests.

He also believes peer support is extremely important for men living with lupus. “Check with your rheumatologist or the LFA. You’ll find it helpful to talk to other men.”

Accentuate the Positive

From wearing hairpieces to dancing salsa, most suggestions for bolstering self-esteem and combating negative thoughts rely on focusing on the positive. You’ll feel good about yourself if you are proactive in your positive thinking and surround yourself with people who do the same.

“I always try to be upbeat,” says Irma Nydia Concepción Ruiz, 43, a Puerto Rico resident diagnosed with lupus in 2006 following a stroke. “I try to stay animated so my family and friends wouldn’t feel sorry for me.”

Ruiz uses a variety of methods to keep looking her best, which, in turn, makes her feel more positive. “I just don’t feel beautiful without makeup. I put on my face, even when I have a moon face,” she says. She also enjoys shopping for new outfits, hairstyles, and wigs.

She encourages fellow sun lovers not to shun the outdoors. “We can’t be exposed to too much sun, but we have things that protect us, so we can still enjoy being outside,” Ruiz says.

If malar rashes or other lupus-related skin problems are affecting your body image, speak to your doctor. “First, your doctor will need to make sure you’re on adequate treatment,” says Victoria Werth, M.D., professor of dermatology at the University of Pennsylvania. “You have to make sure nothing is going on systemically.”

Makeup can go a long way toward covering up rashes and blemishes. Werth suggests products such as DermaBlend® or CoverMark® to cover the pigmentation. “At the University of Pennsylvania, we even have a clinic that helps our patients with makeup,” she says. Many hospitals across the country offer such a service. Werth suggests consulting with your doctor for referral to the one nearest you.

“If someone is really stressed out about some physical manifestation, there’s nothing wrong with going after something to make yourself feel better,” says Phillips. “There are cosmetologists who can help with makeup and stylists to advise you what to wear. I’m a strong believer in a healthy balance between tangible changes and working on your thinking. You want to do both.”

Other tips for keeping that balance include:

  • Join a support group. “The Lupus Foundation of America is so valuable because they provide support groups. You don’t have to grieve alone,” Phillips says.
  • See yourself through other eyes. On a sheet of paper, create two columns and list your negatives and positives next to each other. Can’t think of anything positive? Ask yourself what a well-intentioned, honest friend would say. The results can be eye-opening—and self-esteem-boosting.
  • Reach out. If you can’t do a lot, do a little. If you can’t work, volunteer. “You need to be involved with other people. It’s harder to be miserable with others around you,” Minter says.
  • Invest in a pet. “Having something that depends on you makes you feel necessary,” says Beasley, the proud owner of a dog named Wendi.
  • Give back. “You can encourage other patients, share your story, or become an advocate, all from your computer at home,” Beasley says. “Thinking of others will help take the focus off your current situation and will boost your self-esteem while helping someone else’s.”
  • Seek counseling, if necessary. You may need help adjusting to the changes lupus brings to your life.

And remember Beasley’s advice: Accept every invitation. When you’re focusing outward and grabbing new opportunities, it’s harder to beat up on yourself and mourn what you’ve missed.

Lupus Now(R) magazine is published three times per year by the Lupus Foundation of America.  Your subscription not only brings to your mailbox the only national magazine dedicated exclusively to lupus, funds generated from subscription sales also help support other LFA programs, such as research, education, awareness, advocacy, and patient services.  Consider purchasing a subscription now and help support programs that benefit all people affect by lupus.  A subscription also is included as a member benefit when you join an LFA chapter.

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About Carole

I am a fun loving woman of a certain age who believes that living with lupus is more than just about symptoms, medications and treatment. Laughter and a positive mental attitude are the essential nutrients in my daily diet and I just want to share a word or two to contribute to yours. And I am a certified Laughter Leader!


  1. Funny I should find your blog today. I have been mulling over this same question in my head. Who would I be with out this lupus controling every thought and action in my life. I’ve been writing a blog, bitching about how screwed up my life is and recapping my pass it wasn’t any better before Lupus. So your blog was like hey, go on a quest to find you. Thank you for the thought. I hope this helps me out of my lupus funk and it does the same for others.

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