Scleroderma Has Caused Me to Question My Self-worth
Ever since I was a child, my parents fostered in me a solid work ethic and a refusal to quit. Whether I was playing a musical instrument or competing in a spelling bee, my parents always taught me to never give up. They instilled in me strength to fight adversity. Even if something wasn’t my cup of tea, I learned early on to always finish what I started, no exceptions.
From these traits, I developed a self-worth that was diminished over time, due to scleroderma. For example, when I faced the unimaginable reality that I would have to withdraw from college and wouldn’t obtain my nursing degree because of scleroderma, I was devastated to the core. I felt like a failure.
More than two decades later, that decision is one of the biggest regrets in my life. It makes me feel substandard as a person, despite knowing I wouldn’t have been physically able to finish my schooling.
In some ways, because of that experience, I find myself second-guessing my opinions, ideas, and abilities. I allow my insecurities and other people’s successes to destroy my confidence. At what point do I refuse to allow this disease to take anything else from me?
However I have felt about my lack of education, I have always tried to push forward. I immersed myself in volunteer work, advocacy classes, and public speaking. I took a deep dive into my illness and used my experiences to advance my positions within various organizations.
Yet even with all of the hard work and accomplishments, I still feel inferior at times. It’s something I’ve struggled with since I left college, especially because I frequently work with medical and business professionals, clinicians, and students. In those moments, feelings of inadequacy creep in.
It has become a daily struggle to feel worthy of the positions I hold. I constantly fear that I will let my fellow patients down by failing to live up to the hype I’ve created about myself. It can be crippling to feel inadequate.
But why do I constantly believe I’m not good enough? And how do I overcome those feelings? I’ve worked hard to get to where I am in my career, so should it really matter that I didn’t finish college?
Scleroderma has taken so many things from me. Most are physical, but that doesn’t negate what scleroderma has done to my self-esteem and self-worth.
Nowadays, I lean into the values my parents taught me as a child. I refuse to give up. But change doesn’t happen overnight. When I feel like throwing in the towel, I take a deep breath and remember that not everything beautiful comes in shiny wrapping.
I may not have letters after my name or a college degree, but I do have passion, life experience, a great work ethic, and a willingness to always improve, which are priceless traits. I may be a scleroderma patient, but I am so many other things, too! And that is where I find my self-worth, despite scleroderma.
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.
Amy, I “met” you in the IPE prep and the IPE last week. You are beautiful, articulate, and your inner beauty shines bright. You have a true gift for inspiring others with scleroderma to push forward and live life fully. I have great admiration for you and all you have accomplished despite this disease and far more than many without any limitations!
Jane thank you so much for your kind words! I one greatest hope in life is to change a person's life and allow them to not feel so alone with this disease. Hearing your words gives me so much pride. I do remember you from the IPE and you my friend are a truly a class act!
You're a light in my life. All of your articles hit home and make me feel comforted that someone out there really understands the chronic pain, tiredness, and the rest--the physical stress and especially the emotional stress so difficult to handle. At the same time, very many moments make life truly wonderful and worth the effort--friendships, blue skies through the trees, my little cat curled up on a cushion in a sunlit window, taking online classes to continue learning about our history as humans, about our planet earth, and the expanse of the universe--and added to all that the warmth and love of my husband. I was diagnosed with pulmonary fibrosis in 2015, scleroderma in 2016, and the same year with pulmonary hypertension. I also have Raynaud's syndrome. I take a bucket full of drugs daily. I'm immune compromised, and my most frequent outings are medical appointments. (We used to travel far and wide.) As background to this, 20 years earlier I was diagnosed with fibromyalgia, which always lurks behind the curtains. At my age (80!) perhaps many people would say that it is my time. But on my 50th birthday I decided that I was going to aim for 100--not to pull my punches so to speak. That did not mean I was really going to live to 100, but I was going to accept the responsibility to take care of myself to make that a possibility--knowing full way that all sorts of things could happen along the way to make that goal questionable. That has happened--three major medical conditions with significantly shortened life expectancy for anyone at any age. And I'm 80. Amy, thank you for your thoughtful companionship. It helps a great deal as I amble through life perhaps for a day, a week, a year, 5 years, and on my goodness--even more--perhaps within shouting distance of that 100. In the meantime, when the pain feels all encompassing, I have the image of hanging on to the guard rail of a rolling ship in a storm with waves pounding the deck. And when the pain subsides for a bit or longer--what a gift.
Anita- WOW! what a journey you have been on! I commend you for your tenacity and willingness to push past the struggles of scleroderma and make every moment count! Scleroderma patients all know too weel that our time on this earth is limited and memories and peaceful moments are shinny rays of light for us. Thank you for giving me a peak into your life and what you enjoy! I cannot express how grateful I am for that!
It must be very hard knowing you couldn't finish your nursing degree. I became a nurse, but once scleroderma came into my life, in my fifties, I felt unable to handle the physical and emotional demands of the job. First, I gave up bedside nursing. Then I totally quit (retired early.)
Please know that you are worthy. I know a lot of very intelligent people without degrees. I admire what you have accomplished: dealing with a horrible disease with as much grace as possible. And caring enough about others with scleroderma enough to share your story.
Thank you for sharing an insight into your journey. I appreciate feeling less alone, in the struggle with the physical demands of being a nurse. Thank you for your vote of encouragement- A
Hi Amy, This really resonated with me. I am 55 and i was diagnosed with Systemic Sclerosis at the age of 19 also, I learnt, for the first few years to just incorporate it into my life, making adjustments as I went. I qualified as a Nurse in 2009, late in life. When I hit the age of 51 systemic Sclerosis came back with a massive bang, in the form of a heart attack followed by a triple by pass, since then it has been a struggle to climb a hill to then fall back down it again, I am utterly determined to keep getting up and climbing that hill again, it does get harder each time, but I will carry on, this bloody disease will never define me.
Thank you and all the best x
Lisa your story has touched me. Thank you so much for sharing your struggles. I pray you will find a balance. We both know scleroderma is a game without rules, right? Keep fighting my friend!
BRUCE A. MCCOMB
Don't believe the lies Amy...you are enough! Thanks for all you do for the Scleroderma community. I wish you and Lisa all the best. Tough when this crappy disease hits so young. Thanks to you both for your example.
Amy you inspire me. I am 78 and was diagnosed in 2007 (age 63) with Scleroderma & Pulmonary Hypertension. I was still working in Admin however when I received the diagnosis I immediately retired. My life has been a roller coaster throughout the time before I was diagnosed and was often ill but was treated for symptoms as the Drs in my areas, I feel did not have any clues. My journey, I believe, began when I was in my 30s with quite severe Raynauds and I often had lung issues, then in my early 40s I had heart issues with severe Atrial Fibrillation which I needed to be hospitalised and several procedures (radio frequency ablations) which failed to work. Twenty years later, I FINALLY got diagnosed! I joined the nearest Scleroderma Assoc 2008 and became a volunteer to work in the office 2-3 days per week support person taking calls in particular from newly diagnosed Sc Patients. Where I felt so positive speaking to these people which left me on a high. I have since joined the Committee and have learnt so much about the disease and the need to raise funding for Research (Garvan Institute, Sydney). In the meantime I have deteriorated, including having to go on Oxygen 24/7, together with my senior years health issues, and though still on the Committee, I have had to step back somewhat. I admire the way you travel your country giving talks and advice to Scleroderma patients and your strength to continue with this role. THIS IS WHAT WE NEED. By helping and supporting people as you do, is closely aligned to being a nurse and you are giving people positive advice and first hand knowledge about the disease. When I was newly diagnosed I was desperate to get information about the disease and had to resort to 'Dr Google', What we do need is medical and practicable advice about Scleroderma - I know as I just couldn't get enough and my GP (who had nothing to do with getting my diagnosis) couldn't answer any questions about it. (I changed GPs soon after.) So Amy hold your head up high, you are a complete inspiration to me and I am sure lots of others when they read this page, consider yourself a graduate without letters after your name.
Yvonne, thank you so much for sharing a small portion of your difficult journey with me! You are such a strong person to have had to go through all of that. This disease is extremely hard to put into words and to learn to live with! I admire your ability to do both. Stay strong Yvonne and remember we are all in this together!
Amy....you are such an inspiration to myself and others afflicted with this rare auto immune disease.. Thank you for sharing. Since being diagnosed over five years ago, I have had to modify many of the activities I previously enjoyed ,
However, I concentrate on what I can and not what I cannot do. Kudos to you Amy!!!