Lupus, Self-esteem and Butterfly Warriors

Lupus, Self-esteem and Butterfly Warriors

hurricane-kellieLupus primarily targets women, as does the media. We are often inundated with photographs of young, thin, flawlessly airbrushed women who are the picture of what perfection is supposed to be. It’s the stuff that dreams are made of — and enough to give us low self-esteem. Many of us know that those “perfect” women are an illusion, but that doesn’t stop us from buying the latest skin cream, weight loss product, or serum for full and flowing hair.

Butterfly rash

Sounds kind of pretty when you toss the word butterfly in front of it, but it’s not cute. It’s red, it’s itchy, it takes over your face and can show up in other not-so-fun places. You can’t control it and you can’t rush it away with the latest creams. It’s what lupus does. The butterfly rash (so-called because of its shape) may cause others to stare, and for those suffering with it to want to shy away from going out in public. You will meet that person who used to have acne tell you that they used this product or that, but when you have lupus, what works for other skin problems most certainly will not work for you. So until it subsides or you see your doctor, you, my friend, are truly a butterfly warrior.

Weight gain

Powerpuff Girl has an entirely new meaning for those who get that lovely puffy look when steroid treatments make you resemble a chipmunk hoarding nuts. Again, there is nothing you can do about this weight gain because the medications are working to keep your immune system in check. So, you get to be the woman in the restaurant who people think really shouldn’t be eating that. They have no idea that your girth is truly not in your control.

Weight loss

“That chick needs a cheeseburger,” is my category. The media says you should be skinny, but you shouldn’t be so thin that a fall-alert surrounds you because your legs look too tiny to support your waif-like body. That’s when stares beg to answer: “Why is she so skinny?” and “Is she on drugs?” This too is out of your control. It’s an ironic symptom of your immune system on hyper drive.

Hair loss

Oh, you thought this beautiful flowing mane of hair grew out of my scalp? Why, you flatterer, you! Many people do not realize that hair loss is also a symptom of lupus. So, many patients get creative. There are some queens among us who can boldly go bald, but many others find creative ways to hide hair loss. Then, of course, there are wig options. While we can’t pick skinny, fat, or butterfly rash, today we can be blonde and tomorrow we can be a redhead. We have to take the wins where we can get them. If we’re going to lose our hair, well, what a great time to sport a purple bob!

Self-esteem

I make light because I want you to smile. We are all flawed. It doesn’t matter if we are battling lupus or television commercials. Give yourself a break — you are literally fighting for your life. It’s tough out here for a woman who has a skin rash, too much butt, or not quite enough butt. Feeling undesirable for one reason or another is quite stressful. You are not alone with those feelings.

It would be wonderful if we all looked the way we wanted — with perfect skin and perfect weight — so all of our clothes fit perfect and we looked like the supermodel of the world. But let’s get real. You are already beautiful and you just need to see it. I just need to see it.

We are who we are —  tough people. After all, we get up most days to fight a war that many only see on the outside as not good enough. It is difficult to bear some days. But let’s all lift one another up with the knowledge that it’s what’s inside us that truly matters. You look good to me 🙂

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.

4 comments

  1. Rikki says:

    I ran into your blog by accident, or fate… Whichever it may be, I thank you for your outpouring of experiences & emotions.
    I’ve had some difficulties come up lately. Doctors treat you like you’re a hypochondriac, & would rather mock you than run a few tests.& I’m just now realizing they never look at you as a whole, they look into their “area” then ship you off to another specialist.
    I’ve been diagnosed with narcolepsy(but have questioned it) & actually been having symptoms similar to colon cancer lately. My doctor ran blood tests & set up a colonoscopy. Just got my blood tests back & I had an elevated sed rate. Upon investigating possible causes for it I came across lupus. Now, I had looked into lupus before because of my fatigue. But I always continued searching because I didn’t have any rash or redness.
    Yesterday, I did the same thing… Then went to the restroom and while washing my hands looked in the mirror & my bright red cheeks. Mentioned it to my husband & we agreed I keep getting very “flushed” cheeks for the last couple of months. I have also always had joint pain, I just figured it was arthritis, as well as poor circulation to hands & feet. Even had one Dr mention looking for MS cause my fingers & toes would always go numb. But within the last year it has become more severe. Waking up with painful stiff knees. My body feeling weak & sore like I’m getting the flu but 2 months of feeling this way & the flu has never come. My headaches are becoming more persistent, neck is always stiff & sore. My lower back is so sore I feel as though I’ve been beaten by a bat. Bowels are slow to move. My fatigue, despite stimulants, continues to worsen. Feelings of dizziness & confusion. & The strangest thing of all, after having low blood pressure my entire life, I’ve started seeing much higher BP readings & Shortness of breath. & Blurred vision. Like I just can’t adjust my eyes.

    I’ve tried for 8 years since my last baby was born to lose weight, dieting & exercising with no success. Since mid November I’ve dropped 14lbs. I visited the Dr on the 20th and 10 days later I was already 3 lbs lighter. As I can’t seem to do more than work and sleep, there’s absolutely no reason for the weight loss.

    The only thing that doesn’t seem to make any sense is the bowel symptoms. Large amounts of Black tarry blood, red blood, mucus, inability to complete, & pain.

    I can feel everything getting worse as the days go by. More symptoms, & symptoms becoming more intense. I literally just feel like my body is just dying.

    I told my GI about my symptoms and she responded, “what do you want from me?” Has no concern for the blood and said the weight loss is normal. I know something is wrong, I just don’t know how to find out what.

    • Kellie McRae says:

      Hi Rikki, Reading this causes my heart to ache. I am so sorry you are having to go through this. Lupus is not always characterized by the rash, I never got it but I still have lupus. The doctors are often uncaring, I would agree with that, keep pressing. Take all of your tests from one doctor to the next one when you see them and unfortunately, we really have to advocate for ourselves when we have a chronic issue. I have fired more doctors than I care to talk about because they seemed uncaring or like they were more concerned with frivolous tests to get my insurer to pay than they were with really figuring out what was wrong with me. I am not sure where you are in the country but when the doctors either would not or could not diagnose me, I went to a research clinic. I went to The Mayo and they actually take pretty much every insurance out there. You will find not just caring doctors there but you will find a system that if every hospital adopted it, would make medicine in the US top tier.

      Don’t stop fighting, don’t stop pushing and if you have to get a little mean with the doctors, remind them you are a person not an insurance premium, not a cry baby, not a complainer but a real person with real concerns. I wish you all the best, please go all up the ladder if you must to get the care you require.

      • Rikki says:

        Thank you so very much! I have been really loving your blog. I’m definitely hoping for a diagnosis soon. I feel so useless and worthless anymore… And I hate that when people look at me they just see a normal(first time I’ve used that word to describe myself) person. They don’t see all the pain I feel, or how exhausted I am. Not to mention all of the other symptoms I’m experiencing. I just hope to have answers soon.

        • Kellie McRae says:

          I recently had a situation where the people trying to project “normal” onto me was just exhausting. I have started just saying, well thank you for that info, I’ll look into it and then doing what I need to do. Keep in mind that even if you were completely healthy, people are always going to have 2 cents to add and in any economy, 2 cents means nothing lol I hope you will have some answers soon as well. It is no fun not knowing, its tiring but hang in there lady, all will reveal itself. Do your best to stay encouraged, answers are coming just keep pushing for them.

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