Beauty and the Beast that Lupus Tried to Create

Christine Von Raesfeld avatar

by Christine Von Raesfeld |

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With beauty playing such a pivotal role in our society, women often are criticized for changes in their appearances.

About 90% of lupus patients are women, which can make dealing with the disease more difficult. Lupus can wreak havoc on the body and change a person mentally and physically.

While growing up, my grandma often reminded me that you only have one chance to make a first impression. Appearance always matters because you never know who you might meet or what opportunities may arise. With that notion deeply instilled in my mind, looks became a priority. Because of my slim figure and pretty face I learned through society that looks do matter, contrary to what people would say.

Upon my lupus diagnosis, I underwent high-dose steroid treatment at  325 mg per day. If you have ever had any experience with prednisone,  you can imagine the side effects that came along with this dosage. The first month resulted in a 60-pound weight gain. The weight increased as time went on. I went from 115 pounds to more than 200. Besides the noticeable weight gain, my skin thinned, the cystic acne left gaping sores on my face, stretch marks arrived by the dozen, and my face became unrecognizable.

People who knew me would tell me it was just water weight. I was reassured it would go away. Just the fact that I was still alive was a forced point. When I would bring up my concerns about the weight gain I was told not to worry because I “was still a beauty on the inside.”

But most didn’t understand that the inside wasn’t beautiful. What was on the inside was disgust, self-hatred and uncertainty. My self-esteem was shot. These drugs that were supposed to be helping me were destroying me.

Eleven surgeries took place after my lupus diagnosis, each with its own distinguishable marks and scars. My brain screamed ugliness. I stopped taking pictures and stopped caring about my looks. Why did it matter anyways? I could never have my old life or body back.

Looking in the mirror became depressing and I began to unravel. So many lost memories because I was unwilling accept the superficial looks of my tattered body.

Looking back on those dark days of my life still makes me cringe. I stopped taking medication in hopes it would end the side effects. Being alone had become easier than explaining what was wrong. I was ashamed of myself and embarrassed by my illness. How could my appearance get in the way of  my own health? It could have been deadly.

It took years of therapy and hard work to be able to accept where I am today. While I still have issues with my physical appearance, I’ve realized there are so many more important things in life than just physical beauty. Advice that was once despised is now offered to others. I have realized that we all take this journey in our own time and ways.

Although I may not be where I want to be, I am exactly where I should be.

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.


Shelli leibin avatar

Shelli leibin

Christine, first and foremost, you are stunning. Reading your story was like looking in the mirror at myself and I'm sure many feel the same way. Sometimes the medicine that is suppose to help us feel better is the exact medicine that changes our appearance. NO we are not vain, we will try anything, regardless of the side effects to make us have just one day of peace and no pain. And you are correct in saying that when someone tells you that "you are pretty on the inside", I want to tell them,"oh, if you only knew what my "inside" is going through!! Thank you for sharing your story. ??????

Christine Von Raesfeld avatar

Christine Von Raesfeld

Hello Shelli! Thank you for your kind words! Hearing experiences like yours makes going through these things a little more bearable! It's always nice to know that we are not alone. To know that the thoughts in our heads are not specifically our own make dealing with a disease like lupus a little bit easier. Thank you for reading! ???

Aura avatar


Hello Christine - I absolutely feel your pain. Before I go on - I just want to say you have a brilliant smile! I love your strength. I was 15 when I was diagnosed. I was given prednisone and started gaining weight and even growing hair on my chest. When I found out it was the prednisone causing this I decided not to take it anymore. After several surgeries, I was released from the hospital and all was good - more or less. I am now 49. Two years ago - the Lupus came back with a vengeance. My doctor said the only thing that will help is prednisone - I said absolutely not. I knew that maybe the pain, swellings and other symptoms may disappear - but I knew I would go through mental anguish if I gained weight since I struggled with my weight all my life. That was the LAST thing I needed....I already have hair loss, my hands look mangled, I have neuropathy and really I feel like sh$@t - I just know I couldn't handle the weight gain as well. I already feel I have no control over my body and even the weight I have gained feels uncomfortable. I really am amazed at what people don't understand about Lupus - and the struggle as women.
Your strength is amazing and the fact that you can voice what we all feel - so eloquently. Thank you!


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