Low Self-esteem Is Another Challenge I’ve Had to Face
I like to refer to myself as a candy-coated treat: a hard shell on the outside with a soft, gooey middle.
Since being diagnosed with scleroderma, I’ve often had to toughen up my hard shell to take on the difficult changes — like hand and facial deformities — this disease has brought to my door. Along with scleroderma literally hardening and tightening my skin, I have figuratively thickened it, too, so I could deal with the emotional issues my self-esteem has encountered along the way.
Unsweetened chocolate has a kick
People can be mean. One typical shopping day, a group of young teenagers started to whisper about why my fingertips were gone and why I had a rash all over my arms and back. That completely devastated me. Being the butt of other people’s jokes felt icky and really messed with my inner goddess. It made me second guess how people perceived me and wonder if I was truly an ugly duckling.
Throughout all my experiences of living with scleroderma, that lesson has been the hardest to accept.
Before I was diagnosed, it didn’t bother me too much when I wasn’t everyone’s flavor of sweet. Not everyone is going to like or get along with me, and that’s OK. I have always been an acquired taste.
However, I have noticed that the older and more versed in scleroderma I get, the more I care about what people think of me. I am more hypersensitive about aspects of myself that I couldn’t have cared less about before my diagnosis.
Sweet vs. sour thoughts
A lot of it has to do with the fact that scleroderma has made me self-conscious. My body dances to the beat of its own drum, and my appearance has changed so much that distant relatives hardly recognize me.
Scleroderma has crept its way into my self-esteem. Little by little over the last 20 years, it has chipped away at my candy-coated hard shell. Negative self-thoughts and doubts have seeped through my shell and saturated my positive vibes.
My self-esteem is a work in progress. I have to practice hard not to go down the rabbit hole of abusive, self-loathing language. I find that I am extra critical of my appearance. The way I speak rubs my nerves. My level of education makes me think ill of my professionalism.
This is all primarily because I was diagnosed with scleroderma at the young, impressionable age of 19. I hadn’t had time to grow into myself as a person.
My mind often lingers on the regrets or missteps I have made in terms of my ability to maintain a job or finish college. Even the way I advocate for this disease is subject to self-criticism; I constantly need to question my abilities.
Picking through your sweets to find a perfect piece
It’s not so easy to stop thinking negatively of yourself and to improve your self-esteem. It takes time to wake up one day and think you are a sexy, well-educated, smart person.
For me, it’s so much easier to accept that I am a chronically ill person than it is to embrace my emotional shortcomings. Leading with the “take me for me’’ attitude is so far out of my wheelhouse.
In the end, it all boils down to scleroderma. Placing the blame for low self-esteem in the appropriate box is a step in the right direction, one that helps me understand my feelings and where they are stemming from.
Not every candy tastes great
Scleroderma has slowly, meticulously taken so much from me. I am learning as I go to embrace my body as well as my situation.
To help process my emotions, I have recently gone to see a counselor, which has reaffirmed to me that I need extra support to talk about my feelings and problems. This is a huge step in the right direction to turning my sour attitude into a sweet treat for myself and others to enjoy.
The process of self-growth is limitless. We’re all actively learning to accept our flaws and overcome our missteps in life.
Sometimes living with scleroderma can seem like the road to acceptance is unpaved. We may even feel like we’re constantly driving through rough terrain. In the end we’ll all get to where we need to be. Sometimes it may take advice from a professional — and time — to get there.
Just remember: There are all kinds of sweets, and some are not for everyone. And that’s OK.
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, and are intended to spark discussion about issues pertaining to scleroderma.
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Comments
Lisa Smith
You are very brave Amy, thanks for article, very helpful
Amy Gietzen
Thank you Lisa!
Jose
Dear Amy,
You have a striking way with words. Regardless of whether you realise it, you are a fine poet. This article, with so many expressive lines, already contains a poem waiting for your unique organisational touch.
For example - these lines jumped right off the page at me:
" driving through rough terrain.......my candy coated hard shell......I have always been an acquired taste.......my body dances to the beat of its own drum........ "
And to paraphrase you.....(down) the rabbit hole of self abuse..........(and what ) this disease has brought to my door.
You already have a perfect title for a collection of poetry. about scleroderma:
"The road to scleroderma is unpaved".
Poetry is a wonderful way to express our deepest feelings and thoughts so can be a powerful self-healing tool. It's so inclusive because anyone write poetry.
The joy of poetry is that it has no rules, no grammar or punctuation (unless the writer wants it to); no capitals or full stops (unless the individual decides to use those). While there are poetry 'snobs' in abundance I consider them excess to requirements for nobody is in a position to judge another person's feelings or reactions to any life event or the way it has been expressed.
I suspect you may be a secret 'scribbler' with a stash of poetry tucked away somewhere, that you have already judged harshly. If so, it deserves to emerge into the light. Much poetry already exists in our minds and just needs a gentle nudge to bring it out and share it. This applies to everyone.
The only external tool I've found useful is the spell check, although there's also nothing wrong with creating a new word to describe a particular feeling.
To summarise, it can't be a competition, because there's no right or wrong way to write poetry. There are just lines depicting feelings that reach out and grip us, as so many of yours do. That's my view, formed after a lifetime of reading fatuous nonsense by those who put themselves 'up there' i.e. over us, to tell us that we're any 'good' or not. They're on a bit of a power trip we have no reason to feed.
The scleroderma Foundation reaches out so generously to share knowledge with those of us adrift in other countries. I've been reading the website for years, way before the name change, when it was the humble Scleroderma.org. It's so much easier to find now. I have printed off many articles and research findings for my family doctor who has been grateful for the information, available nowhere else.
I'm in my 70's and you're so young but words bridge age gaps to allow us to communicate shared experiences through a shared language of creation. You're doing a fine job Amy, and it's going to take you places you could never have imagined. I'm so glad you'll be around for the medical break-throughs and the cure.
Jose
Australia
Amy Gietzen
Jose,
THANK YOU! Your words have touched my heart. I have always found writing down my inner most thoughts to be a form of release that no other activity has given me. I do have scribbles upon scribbles on notes and doodles I have jotted down over the years. I also am my hardest critic. Your words of encouragement have reaffirmed I am on the right road.
Dinah Chong Watkins
Great article Amy! I’m officially old enough to be admitted to AARP now and my perspective on age has fortunately freed me up from the social expectations the media throws on us. You go Girl!
Amy Gietzen
Dinah thank you my friend! PS you are amazing!
Leah
Amy, I am so proud of you for sharing your inner most thoughts about this disease which I share with you. Your honest desire to help those of us who suffer also, makes your words even more meaningful. I am old enough to be your grandmother and if you were my grandchild, I would be your cheer leader as I am for my own six grandchildren. You continue to be an inspiration to me and, I am sure, to other SSc Warriors.
Fondly, Leah
Amy Gietzen
Thank you so much! Writhing is a way for me to release my emotions!
Jen Poppe
You are amazing and I enjoy (for lack of a better word) reading all of you articles.
Amy Gietzen
Thank you so much!
Debra Pay
Thank you Amy for this article. I appreciate you for being an advocate not just for yourself, however for us, a public speaker, an educator and so much more. Admiration and appreciation for your achievements abound. I am not the only one cheering you on. I desire to help too. However it is so overwhelming. Where to even start? Simply takes my breath away. I surely do not need more of that. You found a way, it is therefore very possible for myself. Humbly thank you Amy.
Debra
Australia
Amy Gietzen
Thanks Debra, I appreciate you support.
Ilene Wax
Amy
I loved this.