Asking for a Massage, and Getting a Sad Lesson in Prejudice

Lisa Goodman-Helfand avatar

by Lisa Goodman-Helfand |

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What is Scleroderma?

I think about skin a lot more than most white people. I know that’s a really weird statement, but it’s true. Because my skin looks so different, I am quite aware that my skin influences how people perceive me. Having been diagnosed with scleroderma at age 10, I’ve grown accustomed to people staring at my skin.

I feel the lingering gazes when someone first meets me, and I sense them glancing at the red spots sprinkled all over my body. I catch people looking at my pointy elbows and disfigured fingers. As awkward as it is, I certainly never felt that my altered skin jeopardized my safety. In fact, I can count on two hands the number of times I’ve ever felt truly discriminated against because of my disfigurement.

A few years ago, I was at a cycling event to raise money for rare cancers. I signed up to cycle on a stationary bike and support my beautiful friend who is a cancer survivor. The fundraiser was held at a fitness club where professionals were giving massages to participants. I have never had a massage because having to explain details about my rare disease, tight skin, and the red spots that carpet my back doesn’t invite relaxation.

The massages were being given to fully clothed people on tables that lined an open gym area. I thought it would be my chance to get a quick massage while not having to be naked in a room with a stranger.

When it was my turn, I immediately saw that the massage therapist-trainer was terrified to touch me. (This was before I started writing and speaking freely about my disease.) I took the plunge and tried to be honest.

“Hi. I know I look fragile. I have a rare autoimmune disease that causes my skin to be tight and other physical deformities. It’s not contagious, and I promise, you’re not going to break me!” I explained with a friendly laugh and smile.

I fully expected her to reciprocate with a smile and proceed to the massage. Instead, she avoided all eye contact and mumbled something about how I really should wait for my massage until after I rode the bike. I questioned her, pointing out that all the other people on the tables hadn’t cycled yet — and that, when I asked, the woman who signed me up for my massage specifically told me it was best to relax and stretch my muscles before I cycled. The woman uttered some nonsensical response and turned her back to me.

Self-worth damaged

The woman’s dismissive attitude deflated my sense of self-worth within seconds. I went into a bathroom stall and stifled my sobs the best I could. Why had she treated me so poorly? I had donated to the cause just like every other participant, and yet I was being marginalized and rejected for something completely out of my control. There I was, a 39-year-old mother of two, crying in a bathroom because some mean lady wouldn’t give me a massage.

I know what you’re thinking: “Boo hoo for you. So sad that you were denied a massage! Get over yourself and your ridiculous first world problems. Millions of people face real discrimination every day of their lives.”

I completely agree — and that is why I am willing to write about this embarrassing moment. I’m not proud that I was reduced to tears over something so utterly stupid and inconsequential, but this silly situation brings up an important question: If this isolated incident momentarily demolished my self-worth as a fully functional and educated adult, what do similar incidents (or those far worse than this trivial example) do to children and adults? What toll does discrimination take on one’s self-concept?

Imagine being shown in subtle and not-so-subtle ways that you’re not as good as someone else because of the way you look. Imagine being denied access to experiences because you’re perceived as different. Imagine the constant blows such rejection would have on your social and emotional development. Imagine feeling you are never quite as well-behaved, or beautiful, or intelligent, or kind because of someone else’s actions, based on perceptions that have absolutely nothing to do with you. Imagine having these feelings solidified, over and over, every time you step outside your door or turn on the news. Imagine having your self-worth chipped away from the moment you were born, simply because of your skin color, or your parents’ level of education, income, social class, or nation of birth. Millions of Americans don’t have to imagine. They live it every day.

I wish I could say I have some concrete way to contribute to a solution, but I don’t. I do know the first step to resolution is acknowledging the problem and starting an honest conversation. Now more than ever, I hope our country is ready to start talking.

[To learn more about my journey with scleroderma, visit Comfortable in My Thick Skin].

Note: Scleroderma News 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 Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.


Nancy Brier avatar

Nancy Brier

What a beautiful essay. Thanks for sharing with such amazing candor.

Lisa Goodman-Helfand avatar

Lisa Goodman-Helfand

Thanks so much for taking the time to read and comment Nancy. I appreciate your kind words.

Jeanie S. avatar

Jeanie S.

Hi Lisa! I want to also thank you for your speaking out for yourself and others, who may not have the words to express what they feel or what may have happened to them out of pain and hurt. I am a massage therapist; 60 years young, 11 years in the business. I've been through it in life myself and I bet money, this MT that dissed you was very young. I hope she figures it out because believe me, she won't last long in this line of work. I have massaged thousands of people through the years and you would've been welcomed and given a great massage from me. ❤❤❤

BP avatar


Hi there!

I cane across this article off huffpo via fb. As a person with chronic illness (mostly invisible as it may be) AND trained in massage therapy, I am HORRIFIED at the behaviour of that therapist.

It's completely unprofessional for 1 and for 2 it's not uncommon for a therapist if not sure to use gloves (heck I use them more often because I tend to get open wounds a lot from my puppy and it's more double safety precaution for those I work on so I am no inadvertently accidentally transmitting anything to my clients. Regardless though. That's a terrible way to act and had I seen it, I would have publicly gotten in her face and humiliated her and worked on you in a private setting and made you feel like a goddess after your biking and done the before stretching and losening type stuff for you. All for free.

I can only imagine what it's like living with scleroderma. I know the basics of it and what it can affect and typically affects.

As a massage therapist I can tell you most places you can book online and disclose that you would like a therapist that is comfortable dealing with your condition. YOU can set all the terms of YOUR massage. If it's a reputable place. I'm not licensed because my state is ridiculous in its requirements so I do friends and family only (and very rarely friends of friends but its case by case and not advertised type thing). However, I *DO* keep up with all the laws and everything else so I know what's going on community wise. Basic rules for a reputable massage IF you (or others) decide to ever try:
1) does the place have a private bathroom available for use of clients?
2) do they explain to you, in terms you can understand, in language you understand (example being if English isn't first language do they have someone who can interpret for you at bare minimum who isn't just using like google translate or something or if deaf/hard of hearing do they have sign language speaker/interpreter or a text based communication if that's more comfortable for you to communicate? Basically, do they take your communication needs into consideration and try to accommodate them? If so? Great and if not proceed with caution)?
3) do they make you feel comfortable and important? Like your needs and concerns are their number 1 priority at least while you are there (if you are there in person that is)?
4) do they tell you that you *HAVE* to fully undress for a massage or to undress to *YOUR* comfort level? (And if your comfor level is just taking shoes off I do suggest sports bras for women and pj pants or sweat pants or yoga pants just not dress pants or jeans or anything denim or that restricts movement or has buttons/zippers as they wind up being really uncomfortable for you the client.)
5) do they explain what their plan is before taking you to the room? And ask you what you want out of the massage? And if you've ever had one before. And what on your body hurts. And what you are comfortable with being touched. A full body usually has head, face, hands, and feet being touched which some people aren't ok with being touched. As well as back, shoulders, upper arms, lower arms, upper legs, lower legs, upper chest (not breasts but pectoral muscles so underneath and about what you'd see in a square cut top nothing obscene and everything lower is covered), lower back and depending on the therapist can include stomach and/or gluteal muscles which are your butt muscles. If stomach is done breasts will be covered by a towel or pillowcase or some sort of covering over them that will prevent exposure and be placed before removal of covering if not wearing a shirt or top of some sort. If you are wearing a shirt and therapist wants to lift up they will ask well before you are ever on the table if it's ok with you.
7) they will ask you of any allergies or medical conditions. Both when scheduling the appointment AND the day of before you get on the table. If you forget something at the former bring it up at the latter. It is ok. Don't be ashamed.
8) they should assure you that bodily reactions are 100% normal. As is no reaction. Burping, farting, erections, accidental orgasms (I have had my share from tension in my head/neck being worked on and released and whole body just lets go and boom!), crying, unexpected emotions that you didn't know were there suddenly there (anger, fear, sadness, happiness, laughter, virtually any emotion a person can have can be had on a table I have seen it happen on my table more than once), falling asleep is even a possibility. And the biggest compliment a therapist can receive.
9) they'll check in with you during the massage. Is the pressure ok? More? Less? Are you too warm? Too cold? Is this too much? Too little? And encourage communication. You don't have to become our best friend. Just a simple "hey that's really sore there please take it easy or don't work there" is more than enough. We don't want to give you more pain we want to help relieve pain.

I truly hope you never experience this again but thank you for sharing.

Tim Bossie avatar

Tim Bossie

Thank you for the excellent addition to our post BP! Great information and help for anyone looking for a massage therapist.

Linda Wilk avatar

Linda Wilk

After reading your essay in another location, I came here specifically to read your blog and to comment. What a courageous and intuitive woman you are, to move forward from such situations, which you must encounter more often than you'd like to admit, and to use them to draw insight into the experiences of other humans! This massage therapist clearly lacked the empathy that is usually found in her profession. I hope you do not let it deter you from letting you seek out another therapist who is more helpful and familiar with autoimmune diseases. In my own life, body workers have been indispensable to health and wholeness. Perhaps your rheumatologist can recommend someone. Now that I know you are here, I will continue to read your informative blog!


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