Hi Everyone!
This is day 5 for lupus awareness month. The fact is about how difficult it is to diagnose lupus. I kind of went over that yesterday. So I have decided to, ya know, go rogue.
I may have used this meme last year but it is so fitting and it makes me laugh.
I don't know who created this image.
One of the things that a lot of lupus worriers don't talk about is, alopecia. A few months before I started getting really sick, my hair started falling out. One thing in my family is we have good hair. My sister and I always had very very thick and very very long hair, well passed our knees. Mr. M. and I were in AZ for the winter. Had been complaining about my hair falling out. We thought it was the water, or the shampoo and Mr. M. finally said, "Your hair is fine." A few weeks later we got a visit from one of my brothers and his wife. The first thing she said to me was, "What have you done to your hair! It is so thin." Also that winter I got blisters on my arms and legs. Ya know the sun. The lady next door had a child that came down with chicken pox. I never had C.P. as a kid so I thought that's what it was. The doctor told me no and that he didn't know what it was. Gave me some lotion and sent me home. All that and my hair is falling out. For the first time in my life I got my hair cut short.
Over the years I have lost my hair 4 times. I got to the point that shaving my head was easier than dealing with hand fulls of hair. When my hair grew out the first time it was in ringlets. I mean tight ringlets like Shirley Temple.
Yeah, and that's how I felt too.
image from google
I found if I kept my hair short there were no curls and it was thicker. There are a few causes for hair loss. Inflammation with lupus can be in any part of your body. It's referred to as a flare. However, when this happens to the scalp the inflammation directly attacks the hair follicles, damaging them and causing hair loss. For me my scalp gets extremely tight and my hair falls out in my hands. With SLE there is no scaring on the scalp. With CLE or discoid lupus the inflammation can cause skin lesions on the scalp, potentially leading to scarring and permanent hair loss. Medications to treat lupus can also cause hair to fall out. The second time my hair fell out I knew it was due to the medication I was on. I took a bag of my hair in with me to the doctor and told him my hair is falling out. He looked at me and said. "Well I don't know anyone who has gone bald from this medicine." OMFG! I actually said that in the long form. He just looked at me and then walked out. It was the last time I saw him.
Now, losing one's hair may not sound like a big deal to some people. I will tell you it is devastating for the women, men and especially children who go through this.
Because it's not a choice.
AI by me
It's just one more thing to deal with while trying to stay alive.
Nicole
13 comments:
Your powerful story sheds light on the often-overlooked emotional toll of lupus-related hair loss, emphasizing the deep connection between identity and appearance, and the critical need for compassionate, attentive healthcare.
...I wish you a no flare day!
It is a shame that we, as patients, have to inform doctors of the side effects of a med that is listed in the PDR. (I have done that at least twice)
I first learned about lupus when I was working in hair replacement. Hair loss can be devastating for women. And yes, men don’t like it either.
I had a friend whose straight hair fell out from chemo for breast cancer and when it grew back, it was curly. She said it was a common side effect called "chemo hair." I didn't know that could happen with lupus too.
It's a big deal. Most of us see our hair as part of our identity. Losing it is very hard.
I didn't know you can have such terrible hair loss. It's bad enough you have to be sick, but to lose your hair is almost like losing who you are personality wise. Sorry it had to happen to you. I hope it doesn't again.
Your posts on Lupus are very enlightening and I’m learning a lot. I had a relative who had it and no one in the family knew anything about it. I know that she is no longer alive, but I never really found out more about her.
Thank you for sharing such an honest and insightful post about living with lupus. It’s so important to bring attention to things like alopecia, which often go unspoken in the lupus community. Your story really resonates, especially with the way hair loss impacts not just physically but emotionally as well. It’s great to see you embracing it with humor, like the meme, because that’s such a powerful way to cope. Your strength is truly inspiring.
I’ve just shared a new blog post about 'Body Confident You' and a review of the 'Body Confident Kid' book. I’d love to hear your thoughts on it! Here’s the link: https://www.melodyjacob.com/2025/05/body-confident-you-body-confident-kid-book-review.html. Looking forward to your feedback
Thank you for sharing your personal experience and shedding light on the struggles that come with lupus, especially the difficult topic of alopecia. It’s not something that gets talked about enough, and your honesty about your journey is both brave and important. Losing your hair can be so devastating, and it’s clear how much it’s impacted you over the years. I can’t imagine how frustrating it must have been to have doctors dismiss your concerns, especially when you were going through so much.
Your resilience is inspiring, and I’m sure your story helps others who are facing similar challenges feel less alone. Thank you again for bringing attention to this side of lupus, and for being so open about it.
By the way, if you're interested in another thought-provoking read, here’s a link to my latest blog post: https://www.melodyjacob.com/2025/05/body-confident-you-body-confident-kid-book-review.html
Prayers for a cure one day.
I remember Sally Wesseley writing about her struggles with alopecia on her blog, Strands of Silver about a year ago. I had no idea it was also one of the effects of Lupus. I'm learning lots from these.
I never knew this, either. You are teaching me a lot. :)
I lost a lot of hair when I got cortisone. Also my head looked like a ball. There are scary things around!
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