My Scleroderma ‘Patient Persona’ – Unmasked Again!

My Scleroderma ‘Patient Persona’ – Unmasked Again!

Social media is an intriguing thing, isn’t it? It can be wonderful to have sites such as Scleroderma News at our fingertips, and I do believe the internet is a platform that can provide encouragement, the latest information, and a sense of community.

However, one pitfall of social media that I have noticed is that people can present themselves as anyone they want to be, especially on sites such as Facebook.  Interestingly, portraying this type of created persona doesn’t just happen online, it is often used when in the social company of others, or even as a patient (as I have horrifyingly discovered — read on …)  However, it takes rather a lot more work to keep the persona “mask” in place, and if it does slip, then we are sprung!

I recall visiting a very well-to-do acquaintance once, and really wanted her to think of me as a “sophisticated has-it-together kind of girl.” Just about to knock on her door, I noticed to my horror that my knickers from the prior day had made their way down my trouser leg, and out onto her driveway. … I hadn’t untangled them from my jeans the night before and they had got stuck in there, surprising me with their appearance.  I must have been exhausted when getting dressed. Oh dear … almost sprung. Or the time a dog biscuit accidentally dropped out of my pocket on the way out of the posh dermatologist’s office. I really thought I had presented myself as SUCH a nice patient, elegant and classy, so that when he handed it back to me wondering “if this is yours?” I was definitely sprung!

Which brings me to my point.  Tomorrow I am to see my rheumatologist.  She’s a fabulous doctor. The thing is, I want to show her I am “the easy patient,” co-operative and simple to deal with, diagnose and treat … everything tied up in a neat package … an ordinary patient.

Invariably, every time I end up sitting in front of her, the same horribly dysfunctional scenario plays out.  I find myself unable to answer her questions from my authentic patient self.  It’s like I freeze, and think “uh oh … what’s the correct answer … what answer should I be giving her?” So, instead of telling my doctor how I’m feeling, I tell her what I think she wants to hear about how I’m feeling … on occasions going as far as diagnosing myself out loud in front of her!  (She always looks slightly discombobulated when I do this).

Clearly, I’ve been in denial about the fact that I AM a complicated patient.

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Scleroderma is complex, and despite having common aspects, it can present itself differently in each individual.  My desire to be the “easy patient” is a sneaky way of tricking myself into believing it’s not TOO serious and it will hopefully all just go away sometime soon.  Kind of shrinking things into a manageable package I can deal with.  But, unfortunately, I don’t end up giving my doctor a completely accurate picture about what is really going on, which does us both a disservice. Interestingly, she usually gets to the bottom of things quite quickly … I’m pretty sure she’s been onto me for some time.

We all seem to have ways of making our chronic illness manageable in our heads to help us cope emotionally.  I also believe we do need to do this, otherwise we could easily become completely overwhelmed by it all … but my particular way to manage is not helpful in reality.  I need to figure out how to be myself on these occasions, and to be more genuine about my pain, new symptoms and fears about prognosis … you know, the scary stuff.

Wish me luck readers … It will hopefully be liberating to be real and authentic tomorrow, and I’m pretty sure my rheumatologist will also be breathing a sigh of relief!

I’ll let you know how it goes.

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.

2 comments

  1. Eloisa Alvarez says:

    I will love to receive your news. I have Schleroderma and was diagnosed in 2003. I am 61 and doing very well with symptoms that I can manage most of the times but I haven’t being able to heal a finger ulcer for 3 years and it can be pretty painful. Insurance is a real problem as both specialists are quite expensive and therapies too. I appreciate any information you can share about this very much.

    • Kim Tocker says:

      Hi Eloisa…thanks for your comment. Scleroderma news as a whole has many very interesting articles about scleroderma, including up to date studies and information. I encourage you to keep reading it…I really encourage you to subscribe and keep reading :). Nicola Whitehill always has very informative articles.
      Another forum that may be able to put you in touch with others in your country is https://www.inspire.com/groups/scleroderma-foundation/?ref=as&asat=462928346
      This is a forum that may help you to speak to others who live where you are to help you clarify what insurance companies are the best/easiest to deal with and also what others in your country are finding helpful in terms of expenses associated with therapies and medicines available to you where you are. Thanks again, and hang in there.

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