I Measure Success and Self-worth Differently With Scleroderma

Amy Baker avatar

by Amy Baker |

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How do you measure success and self-worth?

It may be a simple question for some, but for those who suffer from chronic autoimmune diseases such as scleroderma, the answer often becomes quite complex.

Like many other adults, I used to measure my success and self-worth by my title and income. It went well for a while. I made a name for myself as a corporate regional marketing director. Building relationships in the community was critical, and I relished getting to know people from all over the state. I wasn’t required to be in an office every day, as my car was my rolling office.

I didn’t make a six-figure salary, but I made enough to take care of myself and my son. My compensation plan included a monthly bonus structure, cellphone allowance, and many other outstanding executive incentives. The position required I work more than 40 hours a week, but I was an executive. I’d never been in that position before, and I must admit, it was pretty cool.

My job allowed me to start later to take my son to school in the morning. It was during this time in 2016 that I began to experience scleroderma symptoms. Fatigue would wash over me with a vengeance unlike anything I had previously experienced.

I clearly remember the day I knew something wasn’t right. I dropped my son off at school that morning. Though we lived less than 10 minutes away, I couldn’t make it home. Fatigue pulled me under its crashing wave. It was winning.

No longer able to drive, I pulled over at a gas station. Less than five minutes from my home, I closed my eyes and slept. I woke up about 30 minutes later, disoriented. I made my way home while still shaking off the cobwebs from my impromptu nap.

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Fast-forward five years: Instead of the rock star I’d envisioned, I am now a professional patient. My reality is not how I thought my life would turn out.

Over the last five years, I’ve struggled to find my self-worth and label anything I do a success. With a chronic autoimmune disease, mental health can be a big, long roller coaster.

I had to mourn the ideas I had for my life. Down the hill of the roller coaster I went.

I had to become my own health advocate and would occasionally get a “W” in the win column. Back up the hill I went.

I have continued to ride this roller coaster since my diagnosis.

I still actively mourn and miss the old me, and would be remiss if I didn’t say that my self-worth has taken a huge hit. I find myself fighting back tears when others tell me about their accomplishments. However, I am truly happy for them.

I want to celebrate their achievements, but how do I do this when I want so desperately to have something for others to celebrate?

Guilt overwhelms me when I feel this way, making me question who I’ve become. It’s isolating to feel like I’ve lost my self-worth. Many chronic illness patients struggle with this debilitating experience.

One thing I can tell you without uncertainty is that you have worth. You matter. You will always be vitally important.

I struggle with that to this day. You are not alone in your feelings. I am guilty of wondering why my life has turned out like this when I see so many of my peers living their best lives. Jealousy and sadness take over.

Just when I think I have it together, I start going through the five stages of grief. I often restart this process when I receive an additional diagnosis. Acceptance is the most complicated stage for me. I accept my new reality, but I still fight it. I still try to live my life like I used to so I can feel some semblance of normalcy. However, my body always brings me back to reality.

My new normal is not what I wanted, and I don’t always understand it, but it’s mine.

***

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.

Comments

Claire Hughes-Roberts avatar

Claire Hughes-Roberts

I empathize totally with your comments. I too am fighting to accept the demeaning and physical effects of Scleroderma as I try to preserve a sense of self worth. It's not easy, but it"s life now.

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Amy Baker avatar

Amy Baker

Claire, I love that word...demeaning. I know that sounds weird but that is just the word I was looking for to describe how it made me feel sometimes. It is so hard to feel worthy sometimes when our bodies betray us but I know that we all have worth and we all are deserving of the best life possible even with this disease! Sending you much love!

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R.Bailey avatar

R.Bailey

I just cried as I read this, My son told me Sunday that one reason my granddaughters cannot ride with me is that my car is always so dirty. Well, I can’t afford having it washed, don’t feel physically capable to wash it myself, and I FREQUENTLY do not empty it all the way bc I’m too tired. That sounds so lazy and I have never been lazy. I’m trying to start a home business to supplement, but it has involved moving a lot in my car. So yes, today the car is full, but my house is clean!!! This came just when I needed it...as one person said, I don’t want anyone else to experience this, but I’m so thankful someone understands.

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Amy Baker avatar

Amy Baker

I sometimes wonder if our family members can truly fathom the extent of the fatigue. It must be hard for them to see us go from being non-stop and physically capable of taking on the world to hardly moving some days. You will do amazing things but don't beat yourself up! You are dealing with a life-altering illness, and you take it one day at a time! Sometimes it's one hour, but you can do this, and you will feel better!

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Dee Dupont avatar

Dee Dupont

Does anyone have constipationn?

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Amy Baker avatar

Amy Baker

I am quite sure all of us with scleroderma experience GI issues! Definitely talk to your doctor!

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lorraine jones avatar

lorraine jones

I thought I could be positive all the time but some days can not because of this horrific disease. But lets all be strong and take all the positive days and rejoice with them. Wish we could all hold hands together because we only know this fight we have. My heart goes out to all of you.

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Amy Baker avatar

Amy Baker

Lorraine, thank you so much for posting! It is hard to be positive all the time. We have to take the good days and enjoy them. When the bad days hit, we must remember the good ones are right around the corner! I am sending you a big hug!

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Nancy Draffen avatar

Nancy Draffen

This is exactly how I feel but didn’t know how tovput into words

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Amy Baker avatar

Amy Baker

Nancy, I am so glad we can connect over this topic. It is so hard to put into words the effects of having a disease like scleroderma. However, I am relieved we can all come together and know we are not alone!

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John Stever avatar

John Stever

When I was diagnosed 5 months ago with systemic scleroderma and myositis I had no idea what an emotional roller coaster this was going to be. I now know, and I also know this is still early on.

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Amy Baker avatar

Amy Baker

John, thank you for commenting. I know when I was diagnosed it was a scary time for me. I thought I would be ok after I walked out of the doctor's office but I was sorely mistaken. It is going to be an emotional roller coaster. I would like to gently encourage you to speak to a healthcare provider for some solid resources to help you through this trying time. And, please remember to educate yourself as you will be your most staunch ally and advocate! Sending you lots of light and love.

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Roshana Malikyar avatar

Roshana Malikyar

I know the feeling
I pray to God every day for the cure all of us and being thankful .could be worse.

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Amy Baker avatar

Amy Baker

Roshana, I pray for all of us also. Even when I have had bad days, I try to reflect on the positive because they certainly could be worse.

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Gracie avatar

Gracie

Thanks everyone and especially Amy how scleroderma is not so wanted guess in each of our lives. When I was reading your story, I could only feel the same way of being confidence and helping others in my life when I was Therapist. But that’s all change for me too and most of us. Depression plaques me especially on the days I do not feel my best. I donot know what is yet to come for me but on my good days what I consider is good, I feel that I can tackle anything and I mostly do on those days that are good. This is my new me/new norm . It hard getting used to . Thanks for sharing your heart❤️. Take care always.

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Amy Baker avatar

Amy Baker

It certainly is not wanted. I am so glad you can recognize your feeling of depression on those days. I tend to be more depressed on my bad days, and my mindset is not as positive. On the good days, I feel like I can take on the world. Our new lives are a challenge. We will have ups and downs, but we now have to encourage, inspire, and lift one another up in love!

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Mary avatar

Mary

You are in good company. I got an unexpected additional diagnosis two weeks ago -- "very advanced degenerative spine disease." Esesentially no support network (in part my own fault). At work I get the strong feeling people just think I'm making everything up because "I look so healthy". And no one asks or seems to actually care beyond that -- you're on FMLA, that's all that matters, lucky you for getting medical leave. Just so sick of what feels like constant battle on all fronts. My current primary emotion is anger, and I don't seem to be able to shake it, no matter how much compassion and understanding and self care I practice. I finally tried to share to the one friend who has seemed to truly care and not just throw out a "get over yourself and be positive" attitude -- who also has leaned heavily on me to with her ongoing issues -- and she completely ghosted me. So tired of one-way relationships. I know people are dealing with their own problems and can't always be there for us, and for the most part I've stopped asking or expecting anyone to be there for me. But I've never felt so alone in my life, and medical and other issues keep piling up.

Ironically, I'd been feeling a little proud of myself, for "managing" all the other current diagnoses to a point of at least livability - still able to put a roof over my head, at least. And the day I was feeling the best in a very long time, literally -- I got the new diagnosis. Something has to give, and it seems to be my mental and emotional health. It's very demoralizing to realize that if something happened to me, the only people who would notice/know for literally weeks (besides my cat :)) are those at my work, and they would only notice because I didn't show up at work, and being hyper-responsible, that isn't normal for me.

Ironically, it just hit me -- after months of extremely deep depression (including guilt for knowing I needed to make life changes but just not feeling up to that, and then distracting myself to not feel overwhelmed with that, and then guilt for not doing anything), anger might actually be a good sign. Anger is active. Maybe anger is exactly what I need, to stir action and energy to find the ways to begin to "succeed" at this level as well. At least anger is more alive than depression. And I realize, anger has presented to act as my backbone in the past, in times when I needed to leave toxic situations.

And now I have therapeuted myself. :) Thank you for listening, and for sharing. May you be blessed, as you have been a blessing.

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Amy Baker avatar

Amy Baker

Mary, I completely empathize with everything you have written! I, too, find myself in the anger stage more often than not. I felt like I could have written what you wrote because I have felt all of this on so many dang levels. I often wonder if people actually think before they speak. No one wants to be on FMLA. No one wants to consistently and constantly explain why you are sick when you don't actually look sick. That was a huge piece for me. I look fine. No outward changes in my facial appearance or other items that would say, "Hey, I'm sick."

While we want people in our lives to encourage us, we also need them to listen to us actively. I know how hard it can be when you want someone to try to understand what you are dealing with in your life. I had people tell me to stop being the disease when I would talk about it or worry about the next outcome. I, too, felt like every time I would go to the doctors, some new diagnosis would ruin my life. I felt like I was spinning out of control. Let me say this, BE PROUD OF YOURSELF! You are doing a heck of a job taking care of yourself! Thank you for calling me a blessing but the blessing is meeting other souls such as yourself and helping each other get through!

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Margitta Hapke avatar

Margitta Hapke

what? how about helping mom! spending some time and clean your car for you.... I just tell my daughter when I need her help. Any family member should have an hour or two for someone soo sick. Best wishes to you

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