Being Labeled a Fraud Is My Most Pressing Scleroderma Fear

Being Labeled a Fraud Is My Most Pressing Scleroderma Fear

I have been feeling strangely unsettled as of late. My unease is not due to the current state of the world or a nasty flare-up. It is scarier than those things and associated with the next procedure for which I am scheduled.

My cardiologist has me lined up for a right-heart catheterization and cardiac conduction studies in a few weeks. I was describing the procedure to my friend who realized that I was feeling frightened. 

Her query at the end of my detailed explanation surprised me. “So you’re feeling really scared about having that done to you?” My answer confounded us both. “Not overly. I’m a bit apprehensive, but that’s it. It’s something else.”

On reflection, I could understand why she’d assume it was the procedure itself that was the problem. However, I, like my fellow scleroderma patients, are used to undergoing frequent medical procedures.  

We are subjected to everything from X-rays to tubes inserted via veins, arteries, and other orifices. Injections, surgeries, blood tests, oxygen therapy, feeding tubes, splints, mobility aids, physiotherapy, and many more have become realities in our lives. And we learn to live with it all. We develop a bizarre kind of trust with the medical profession; we hope that the results of these tests will give doctors the knowledge to help us.

While I have some mild anxiety about my upcoming procedure, my friend was bang on the money when she picked up on my fear about the test in general. So I embarked on a self-exploration journey to figure out the source of my fear.

I went through the entire procedure in my mind to attempt to unearth the focus of my anxiety. I noticed my apprehension kick in when I reached the end of the scenario at the point where the doctor was giving me the results.

Was I afraid he’d tell me there was something wrong? Strangely, the answer was no. I was fearful that he would tell me that nothing was wrong!

I realize that this sounds odd. As a chronically unwell person with a serious autoimmune disease, I want to be well. My scleroderma has not become my identity, and I do not want to remain sick to gain attention.

My real fear is that if they don’t find out what is going on, then I will have to continue living with the unbearable symptoms I’ve been experiencing. I might start questioning my disease experience and begin to wonder if I am going crazy.  

My greatest scleroderma fear turned out to be that the people who are there to help me may not believe me. Consequently, if I am labeled a medical fraud, then I will have no support to relieve my symptoms, and I will stop believing in the possibility of an improvement in my quality of life. I’m afraid to lose hope, which is essential for me to live my best life possible with scleroderma.

It turns out my fear of being shunned by the medical profession as a fraud is my biggest scleroderma fear. However, now that I’m onto it, I am working hard at cultivating a determination to believe in myself and my disease symptoms. I’m driven to persist until I can find answers to my scleroderma complications.

I have realized that part of never giving up when living with scleroderma is to trust in myself and my disease experience. It’s a work in progress built on hope rather than fear, which is a much better foundation to start from when seeking answers.

***

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.

I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
×
I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

7 comments

  1. Chris Nickerson says:

    I think it is important for Scleroderma patients to be helped to meet each other. This is likely to reduce the fear factor. The Royal Free has a Family Day once a year but does not result in patients talking to each other.

  2. susan meister says:

    Wow!!! This is my fear too! Even yesterday when I had my colonoscopy, my Gastro guy didn’t really ‘know’ about Scleroderma and said ‘so your esophageal problems are not from Scleroderma right?” – NO they ARE from Sclero!! How does this top educated man not know about Sclero and the complications? Many drs. do not know, they do their little section of medical over here and don’t pursue more research. Then of course, you feel you are ‘just making it up’! I do not go to the ‘big’ hospital near my town as its downtown and there are other complications with that, so I see my local drs. I am educating them, one at a time :))

  3. Christina says:

    Boy, does this resonate with me. Recently one of my parents actually said they believed me about a recent medical issue even though the hospital found nothing. After years of being labeled a hypochondriac by my parents, they finally believe me but my fears that doctors and the hospital won’t are still high. I have test results, I know I have legitimate problems, the doctors do as well but I’m still always afraid when I go in for something new that they’ll think I’m making it up or seeking drugs if they can’t find anything to support that particular issue.

  4. Rick says:

    I’ve been to approx. 30 doctors over the last 4 years. I’m +ANA, +dsDNA, +ACA, +ssDNA with a long list of symptoms, all pointing to rheumatological causes, at least in my mind. Weakness in the hands, loss of dexterity, joint pains, muscle weakness, chronic fatigue, dry skin, dry eye syndrome, skin thickening all over my body, tendon pains, carpal tunnel pains, and yet none of those 30 doctors, including 5 board certified rheumatologists, 5 dermatologists, several ER doctors, a neurologist, an ENT, a number of internists and family practice doctors, a few pulmonologists, including Dr. Aryeh Fischer at UoC in Denver, none of them will diagnose me. I’m getting weaker and symptoms are getting worse. I’d almost say it looks like a conspiracy to leave me undiagnosed and continue to deteriorate until I die. I’ve known that this was autoimmune for 4 years because there is nothing else that can be found but the + autoantibody tests and all the symptoms and strange things that have happened to me. Next week I’ll be getting some biopsies and maybe, just maybe I’ll finally be vindicated. So I understand your fear completely, I’m living it every day.

  5. newby says:

    Thank you for this thought and the “permission” to feel this way. I am lucky to have a very mild case of what they used to call CREST. Even with my mild symptoms, before my diagnosis I was feeling like an overly sensitive, whiney, normal person who was just too aware of odd things in my body.
    And now my daughter obviously has autoimmune symptoms but no one is taking her seriously to find out what it is – reading your article made my heart ache for her. And I will share your article with her. Thank you again.

  6. Nancy Krumrei says:

    THANK-YOU!!!
    This is my exact story! I have been feeling the same anguish as the writer. I’ve been coping with Scleroderma (Systemic Sclerosis with limited Cutaneous Skin Involvement) for thirty years.
    It hasn’t been easy to say the least, but, after several miscarriages I was able to give birth and raise three beautiful daughters who are now successful adult women.
    I worked as a RN for the same amount of time, took care of my own family & cared for both parents in their later years til their passing as well as cared for two brothers who suffered early deaths; one due to malignant Glioblastoma Brain Tumor & one who suffered for years before succumbing to the ravages of Lewy Body Dementia.
    Now, the years of chronic illness has taken its toll on my internal organs
    & I now suffer severe hypoxic chronic respiratory failure & require home & portable oxygen. About three months ago I started having heart arrhythmias & am currently going through a complete cardiac work up.
    The shortness of breath is becoming debilitating & I can’t exert myself even minimally without feeling like I must sit or lay down to catch my breath.
    I had the Rt. Heart Catheterization last week. When the Doctor came in I certainly didn’t want to heart “bad news”, so why did I feel bad that it only showed “mild PAH” and NO arrhythmias seen during procedure?
    It was the same feeling this woman described so perfectly.
    Why do I feel insecure with the Specialists? Certainly my medical record well document a confirmed diagnosis & what the ravages of Scleroderma has done to my body. My entire body surface is dusky blue & mottled now, not just my fingers & toes. So clearly, they must know I’m not seeking secondary gain by complaining of increasing shortness of breath. But, I did feel that way. It makes one doubt their sanity sometimes.
    The next step is to see what happens in my heart & lungs while I’m actually exerting myself. I am fine at rest but any walking drops my O2 Saturation (( documented in two failed “6 minute walks” with O2 Forehead Sensor which is the most accurate way to measure O2 saturation in patients with severe Raynauds like me.)

    Now I can go on to the next procedure believing in myself. I know my body better than anyone else. I want answers so I can receive the right treatment to extend my life. My daughters and now two baby granddaughters, my siblings, my nieces & nephews all need me and I need them. So I will persist and never give up.
    Please let the writer know what an impact her story had with me. It was profound and very therapeutic.
    Thank you so much!
    Nancy

Leave a Comment

Your email address will not be published. Required fields are marked *