The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.
This month, we asked Sharing the Journey participants the following question:
Alopecia (hair loss) and skin issues like the butterfly rash are common symptoms of lupus that affect your appearance. For some, the onset of these symptoms can be very upsetting and lead to low self-esteem and other emotional issues. What has been your experience and how did you cope with this change to your appearance?
Hair loss can be a very frustrating symptom of lupus. It’s not really something that can be hidden from anyone either. I have personally dealt with several bouts of hair loss. Having a good hair dresser who can style your hair in a way that you can cover it is important. For me, using good quality shampoo/conditioner with a thickening agent is helpful, and HATS! These can all be helpful tools. Even with all of these, there still might not be much to do about it other than knowing your body is in a flare, and seeking guidance from your physician. I always remind myself that it is temporary and it will grow back! – Roxi
Like a lot of people, I am sure, I fell into a deep sadness with my new appearance. I had never experienced hair loss or a bright red rash on my face before. It definitely took me a while to get comfortable with these new parts of me. I usually cope with things by taking action. I got hair extensions to thicken my hair and I started taking vitamins that helped with hair growth. I also got makeup that was more calming on my skin and I would cover up my rash when I went out. I am in no way ashamed of how lupus changes my outer appearance, but I do like to feel like myself while battling this illness and that’s how I went about it for myself. – Beccah
Unfortunately, I have experienced both hair loss and skin rashes such as the malar butterfly rash. My first instinct was to retreat and hide, but I have since realized I am beautiful no matter what. I now own my scars, rashes and missing hair. I put my hair in protective styles that don’t pull on my hair and I use makeup to enhance my beauty. I take skincare seriously and use sunscreen daily. I have decided that as long as I am alive and well as I can be, my focus will be on self-love and self-care. Remember you are your biggest supporter, advocate and cheerleader. You are beautiful/handsome despite hair loss and skin issues. – Angel
When I was first diagnosed with lupus at 10, I had a really difficult time coping. I wasn’t sure why my hair was coming out in clumps, or why my face was really red and irritated; and being of a lighter complexion, the rash was very noticeable. My peers at the time weren’t always as nice or understanding about the changes I was going through, so I had to develop a tough skin. As a teenager, I used to stay at home a lot because I didn’t want the pity or to have to explain what was going on with my body. As an adult, I’ve had a different reaction to it. Now when I’m suffering from extreme hair loss, I’ll cut my hair to a healthy length or I’ll wear it natural and let my kinks and coils give a fuller appearance. For the rash, I sometimes use a mild cover-up just to lighten the red appearance and other days I do nothing just because this is me and I say take me as I am or leave me alone.
Not only does alopecia and the butterfly rash change the appearance of someone with lupus, but also the medications we take. Prednisone is a medication that has changed my appearance many times from the moon face, weight gain and stretch marks which caused me to feel self-conscious. Prednisone blew me up when I was around 11 years old and I developed stretch marks on 85% of my body from the rapid weight gain from the high doses. I was so embarrassed that I used to wear clothes that covered up my marks no matter how hot or how uncomfortable I was. People would literally stop and stare, point and whisper, I’d be lying if I said it didn’t hurt and cause me to be in a shell for a while. In my mid 20’s I decided that I’m going to be comfortable in the skin I’m in and not worry about anyone’s thoughts or opinions of how I looked. God made me this way, and I wear my battle scars proudly.
I’d say I’ve relied heavily on my faith in God and my family to cope. I’ve always kept the mentality that no matter how bad I have it, someone out there has it worse and it’s kept me humble. Also knowing, trusting and having faith that things will get better. Now I have a community of lupus warriors who not only understand what I go through, but they can relate. That is why sharing your story with others helps. – Jaime
If you find that you are experiencing hair loss and the butterfly rash, two common symptoms of lupus that can affect your physical appearance, it’s important to know that it’s okay to feel many emotions when these symptoms occur. Changes to physical appearance can have a profound impact on your emotional and mental state. As our lupus warriors shared in this month’s issue, coming to grips with the sudden change can be a difficult and frustrating adjustment, but it doesn’t have to control or define you. There’s a wealth of educational resources that you can lean on for more information and understanding of how lupus affects your scalp and skin. You can also join, LupusConnect, an online lupus community where lupus warriors find the support they need, and discuss hair loss and skin issues with others experiencing similar symptoms.
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