Am I Jealous of Someone Else’s Diagnosis or Angry With Scleroderma?

Lisa Weber avatar

by Lisa Weber |

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I hate admitting that I often find myself trapped by jealousy. It makes me feel like I have a rotten core. Do all good people have these thoughts? Or am I an imposter failing to be the genuinely good person I aspire to be?

An inspiring story filled me with envy.

My husband and I sat side by side on the couch enjoying a football game, a typical Sunday in our home. The announcers turned our attention to the quarterback’s wife, briefly mentioning her inspiring recovery from brain surgery to eliminate a tumor. I’m a sucker for happy endings and overcoming disease, so naturally, I grabbed my phone and began searching for more about her story.

I read every article I could find. They all said the same thing: They found the tumor, she had the surgery, and then spent the next year recovering and regaining her strength. Her surgery was less than two years ago, and there she was, smiling and crouching down to talk to someone sitting next to her. She was now almost fully recovered and focusing on a healthier future. Her story filled me with jealousy.

I immediately started to question what was wrong with me! Her journey was not easy. I can only imagine how terrifying it must have been. At the time, she was a young mother who had to fight for her survival. I know firsthand how traumatizing it is to have your life hanging in limbo, not knowing if you’ll be around to help your children through adolescence. How could I possibly be jealous? Reading articles online gives me no right to assume I know everything about this stranger’s journey into the depths of hell and back!

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Stopping to find out what was really bothering me.

It took me some time to process the unwanted thoughts and figure out where these feelings were coming from. But I knew it was important to unpack them and get to the root of the real issue. I have found that if I don’t analyze these misplaced feelings, they hold me further away from the joyful world I prefer to live in.

I must have asked “Why?” a million times. Thankfully, I unlocked the heavily guarded box that held my true thoughts. I’m not jealous of this beautiful woman who survived a horrific diagnosis. I’m jealous of a battle that could be fought with an end in sight.

Make no mistake, I do not want to trade my diagnosis for one of cancer or any other disease. I simply long for a world in which I can be healthy. I want to be able to get better. I’m not jealous of a cancer diagnosis, I’m just angry that I have scleroderma!

Scleroderma has no cure or treatment options that can fix me. Doctors can only prescribe medicines and procedures to slow or hopefully stop the progression of symptoms. That is where my dark thoughts come from — I just want a chance for a better life free of physical pain, struggles, and uncertainty. I want the chance to win this battle and be healed.

Knowing why we’re upset opens the door for mental healing.

It’s important that I reflect upon those negative feelings, because it allows me to channel that energy in the right direction. It’s clear that I’m still struggling with the idea that things won’t get better. This knowledge lets me focus on overcoming those serious emotions. Maybe I can learn to accept my fate? Or maybe there’s a way to hold on to hope without letting the darkness creep in.

I wish I had these answers. Perhaps I need professional help from someone trained in this field.

Don’t let your negative feelings hurt others.

One thing that’s certain, chronic illness constantly places me on a roller coaster of emotions. It brings out the best and the worst in me. When I don’t stop to find the origin of my negative thoughts, I tend to direct them toward people who don’t deserve it. As a result, I unintentionally hurt others.

Lashing out at innocent people can be a byproduct of buried emotional stress, so it’s helpful to keep it from getting buried in the first place. It helps to stop yourself when you notice pessimistic thoughts hijacking your mental state of mind. Step back and be quiet in your thoughts. Keep listening until you discover what you’re truly upset about. If that doesn’t work, it’s OK to ask someone else to help you sort through your complex mind. Mental strength will always be a work in progress.

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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

Diane avatar

Diane

Thank you for this article. Sometimes.. I find myself feeling that no one is actually ever cured of anything. The fight seems to be ALWAYS ongoing, always rough, always painful even if the original disease is claimed to be "cured". So I too, couldn't figure out why when someone had a horrible tumor, it could removed, and the person would be on the road to recovery, it could actually make me angry! How come that will never happen for me??? Again, thank you. It's good to know we're not alone and that we have each other

Reply
Lisa Weber avatar

Lisa Weber

We are definitely not alone! We have to keep the faith that a cure is coming. Every day, new medications are being developed. We just have to stay strong.

Reply
Jose avatar

Jose

Lisa's story really illuminates the frustration when comparing living with scleroderma to other diseases. I was diagnosed with scleroderma in 2009. In April this year (2021) I discovered a breast lump and was rapidly diagnosed with breast cancer. I was immediately scheduled for scans, biopsy, then surgery. After a few weeks to heal, that was followed by 28 sessions of radiation over a 6 week period. It's now September and after recovering from both the surgery and radiation, I am about to begin a course of hormone therapy that involves taking one pill a day for five years to reduce the risk of the breast cancer returning. Compared to scleroderma the breast cancer treatment has been a walk in the park. That's not to imply it's been easy, but knowing there's immediate, trustworthy intervention, plus a likely positive outcome, has been extremely comforting from the day of the diagnoses up to the present time. I don't think about or worry about the breast cancer returning. However, slowly but surely, the scleroderma symptoms continue to progress. I am fortunate in having ongoing physical as well as emotional support from my husband that makes my life with scleroderma "liveable". If anything happened to him I would surely panic because I am now physically unable to live alone. Now that's a very, very scary thought. My heart goes out to people with scleroderma who live alone. That must be toughest situation of all.

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Lisa Weber avatar

Lisa Weber

Thank you for the kind words, Jose. And you bring up so many good points. Especially the scary thought of going through this disease alone. I'm eternally grateful for my family and my heart also breaks for those suffering alone.

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Margitta Hapke avatar

Margitta Hapke

My husband is my full time angel and driver( cannot have any sun due to lupus as well )he is over 70 sick himself. I cannot exist without him.

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RMO Johnson avatar

RMO Johnson

It so hard to simply be a human struggling with very real emotions that we sometimes don’t want. As for me, I am in limbo. I was recently diagnosed with Scleroderma. I have more good days than bad but I have not stopped to question why me? It just is what it is. So long as I can stay mobile and do what I love best - teach. I’ll accept it and just keep going. I decided I have no time for self pity or anger or retreating into my shell. I have been blessed by the gift of gratitude and have learned to be happy for others’ good health. This keeps me going. It is true that on bad days I wonder about the dark road ahead. My rheumatologist often gloomily hints that these are early days and that worse is yet to come. He says that I am “lucky” to recover so quickly from an attack. So for now I’ll take my good fortune and wish all of us the same - swift recovery from the bad days and as “normal” a life as possible. I enjoy your writing. Thank you.

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Lisa Weber avatar

Lisa Weber

Thank you for taking the time to comment! Remember, no one has a crystal ball. Not everyone gets worse, in fact some people get better! The road ahead is just that- a road ahead! Enjoy every moment you can!

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Jose avatar

Jose

You and I are both so blessed to have a wonderful husband. My very best wishes to you both.

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Sherry Pelster avatar

Sherry Pelster

I am very lucky to have a very mild case of CREST. It has changed my life. I moved to Hawai’i for a much warmer climate. I was diagnosed in 2007. For me the scariest part was not knowing if I had a mild case or even worse! After two years I felt better about my prognosis
I’m hopeful that there will be a cure sometime! Not in my lifetime but soon I hope.

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Leah avatar

Leah

Jose: I too am lucky to have the support of my husband and mainly the care of my son. He moved from the west coast to the east coast when I was diagnosed and became my angel. He is my advocate in this horror of Scleroderma and now lives with us and works via the web from here. He is a full time caregiver, communicating with my health professional and monitoring my medications and my appointments. His own life has been interrupted by my illness and I don't believe I would still be here if it weren't for him. Everyone needs an advocate and I hope that anyone who reads this knows how important that is. We are all on the SSc train and we don't know where it is going but thankfully there are generous people who contribute to the ongoing research either by d donating or giving their services as professionals.
To all: stay strong and keep the faith!

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