The Things People Say

The Things People Say

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Lupus is cruel. It flips your entire life on its head. It robs you of so much, and it loves women for some reason. Men get it, but the vast majority of those suffering are female. We live in a society that says even the healthiest women should be slimmer, always have a youthful appearance, and have long, flowing, healthy hair.

Sadly, for many of us battling, lupus steals our hair and does many other things that the normal standards of beauty don’t embrace. Steroids cause some to blow up to weights they are uncomfortable with, and some of us become rail thin. Even with the weight fluctuations, we manage to try to find a way to look good. We battle skin rashes that take over our faces, and we do our best to wear makeup that will still allow us to feel pretty. However, hair falling out seems to be a crossed line that many of us can’t quite cope with.

When I first cut my hair off, it felt empowering; then, within five minutes, I thought, oh crap, I cut all my hair off! I could have decided to just wear a wig, but I honestly was doing my best to alleviate unnecessary stress. Believe it or not, the idea that the wig would not sit right, or would blow off, and so on, was additional stress. I went to wearing headwraps (which I still do on occasion), but initially, it was me hiding.

Then a mean man basically told me that he found me so unattractive that he felt sorry for me. That catapulted me into the world of being boldly bald. I am a person who grew up fighting and, before lupus, I would tease and tell people I’m confident just to the inside border of arrogance. His comment met me in fight mode, but I have spoken with many others who have had to make the decision to cut off hair that was falling at rapid rates, and they are not so thick-skinned. They get discouraging comments telling them they look like men, people who know them now question their sexual orientation, and there are others who have lost friends because they don’t like the way they look.

It’s sad that a decision that doesn’t even affect the bullies creates such ugliness.

Since the incident with the man, I have fully embraced my new look. When I first cut my hair, I got questions about my “style.” I would explain: “I have a medical issue that caused me to cut my hair.” I then moved to a place of more confidence, and since I live in a tropical place, I started saying, “It’s hot here, and hair is hot.”  Then I got even bolder. Most inquiries start with, “Can I ask you a question?” My response now is, “As long as I can ask you one in return.” When they ask about my hair, I respond with, “Before I answer your question, let me ask you mine. How does knowing about my style choice enhance your life?” I have not met anyone able to tell me how it could. I then say, “Well, since you can’t seem to answer my question, I can’t answer yours.”

I am tired of people thinking they get a say in what I should look like. We are warriors, we fight for our lives every single day. We are doing the best we can, and if people can’t find something nice or supportive to say, then we should not have any qualms with them going away. Removing themselves makes life easier for us — one less stressor to deal with.

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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. Shelley A Glenn says:

    I find it ridiculous that SOME MAN told you that he felt sorry for you simply because you did not have hair. I feel sorry for him that his brain is so small. You are a beautiful woman, hair doesn’t change that. People make me so mad. They think that they can say anything and the Internet has made the problem worse. Now bullies can say whatever they want, whenever they want with no repercussions. I am sorry that lupus stole your hair but I am thankful that you’re here to give a voice to the sometimes voiceless. Peace and love.

    • Kellie McRae says:

      Thank you Shelley, I agree that people really do have a lot of nerve. I am just glad he said it to me and not someone who it would have crumbled. We all know this disease is tough enough and having others be ugly can send us running to avoid. I hear from so many who have lost their hair and they are sometimes in tears at the things people say. Thank you for the compliment as well 🙂 the folks on the internet really can be mean, I call them keyboard commandos, they say things behind the scenes that they would never say to people in person and its too bad they feel the need to beat up on others.

  2. Terrie Aul says:

    In some ways, sadly, it is ironic funny, that a MAN said that to you, when MEN go bald all the time and do we put them down, tell them they look unattractive? The nerve/audacity of people just floors me. Didn’t anyone teach them some manners? Being civil? Even just having human kindness? Like on the playground? Blows my mind! I love the way you handle the questions, that IS funny! And so true also. Why do some of us think it is OK to ask any question just because it may be done politely? Again, the audacity AND stupidity of people. Sometimes I wonder how God can love us all, some are just sooo stupid and ridiculous, I just sit back and wonder.

  3. Vicki says:

    Hi Kellie, I have had to shave my hair off as it has been shedding for the past 3 years. I have postive ANA with Sjogrens and then MCTD (although they sometimes call it undifferentiated Rheumatoid Arthritis). The shedding (and scalp pain) drove me crazy and I did the same as you I shaved it short 2 years ago, felt great for one evening and then when I woke up after another bad nights sleep, I looked in the mirror and thought CRAP! I have had to shave it shorter and shorter, especially this year and am now a Grade 2. This has changed me, I hide under hats, dont socialise much, and have stopped exercising as too scared to sweat as I dont want to wash my stubbly head every day and still see short hairs all in the bath. I have been asked if I have cancer several times (mainly by men), and have been stared at more times than I can remember. I die inside each time. I feel like my choices have been taken away from me – my choice to jump out of bed, tie my hair up and just walk out of the house to the shops, to the gym, to see my friends. Every day I have to assess the weather to work out what kind of hat I can get away with. I am desperate to buy a wig, but I just cant find a good one. Do you have patches of hairloss or a fairly good covering of hair (btw you have a fabulous face!). I am 49 on Saturday and all I see staring back at the mirror is a sad aging lady. Do you have instagram, or is this the best way to keep in touch with you (if you dont mind). I could do with trying to become a warrior!

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