Grieving the Old Me, Before I Was Diagnosed With Scleroderma

Amy Baker avatar

by Amy Baker |

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I wonder if the “old Amy” thinks of me as much as I think of her. I miss her terribly. She seemed to slip away from me without me even saying goodbye.

My heart aches for who she was and who I am now becoming. I didn’t ask for any of these issues. But here I am, becoming a newer version of my older self.

Being diagnosed with scleroderma, a life-changing progressive disease, entails a sharp learning curve. It’s like a runaway freight train flying down a steep mountain with no hope of slowing down.

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My body doesn’t seem like my own. What happened to my body? You know, the one I was born with? The one that has completely betrayed me?

I have always preferred to be in control of my environment. Knowing what to expect and when to expect it was a comfort for me. Before receiving multiple autoimmune diagnoses associated with scleroderma, chronic bronchitis was my only “sick friend.” At least with chronic bronchitis I knew what to expect when I was ill.

Now, being tired is common. That’s a sign of adulthood, I’d tell myself. Not to worry, I’ll catch up on sleep another time.

But the fatigue associated with scleroderma is not just any type of fatigue. It is the supervillain of fatigue. It will sneak up on you and wrap your entire body in its clutches. It will pull you under no matter how hard you resist. Fighting is futile.

The unfortunate and terrifying reality of living with scleroderma is that its symptoms can interrupt life at any moment. As chronic illness patients, we must prepare ourselves for this reality. We can go from being excited about the prospect of doing something to having to be ready with a viable excuse for when our bodies say, “Nope, not today!”

Our lives are being irrevocably changed, which is an excruciating realization. A ton of guilt is associated with living our best autoimmune life. Guilt, fear, and extreme sadness are just a few of the emotions we experience.

And these feelings tend to be on the deeper end of the spectrum. My feelings of sadness weren’t the usual feelings of sadness. At that level, emotions can be overwhelming.

The harsh realization that my body was no longer my body led to deep depression. I went through the five stages of grief. Often, I mourn my former self, which is the hardest part of this journey for me.

Through all of this craziness, the stages of grief — denial, anger, bargaining, depression, and acceptance — aren’t always experienced in order. Some days I am depressed. On others, I accept my new existence. I am often angry and ask, “Why me?” Yet, I’ll add, “Why not me?”

I’m also stubborn, so more often than not, I’ll find myself floating in and out of the denial phase.

One thing that has truly helped me is finding a great support system. I still actively mourn the “old Amy,” but I have to make way for the awesome new Amy. I remind myself that I’ve been given this life to be a testament to strength and perseverance.

Life is hard. Living is not for the weak. My fellow scleroderma warriors, keep pushing, keep moving forward, and keep being a testament of strength and hope to those around you. We are in this together, near and far.

I know you get tired. I know it’s a challenge. But together, we’ve got this!

***

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

Margitta Hapke avatar

Margitta Hapke

thank you for the great article, I feel exactly the same. A horrible daily rollercoaster, Extremely hard on partners and family too!

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Amy Baker avatar

Amy Baker

Oh the roller coaster, am I right? Thank you for your kind words of encouragement. That is a great point you bring up! Partners, family, and friends can experience a very hard time also when we are diagnosed. This is definitely something that gives me pause when I think about it. They experience their own loss. Sending you love and light, always!

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Mary B avatar

Mary B

Thank you for sharing your soul. It is definitely a journey. <3

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Amy Baker avatar

Amy Baker

Mary, it sure is! I appreciate you taking the time to read this column and commenting. It is a journey we can take together. <3

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Becky Bailey avatar

Becky Bailey

Amazing, accurate description of life as it now is. I cried all the way through…only had to wiped my eyes 3-4 times to complete the article! I hate to say that it’s good to see that others feel like I do, but since we all have a lot going on in our bodies, how beautiful to have this expressed and to be able to explore my feelings once again.

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Amy Baker avatar

Amy Baker

Becky, that brought tears to my eyes. I cry when I write these columns also. And, it is ok to say you don't want to be the only one. I have felt that sentiment multiple times throughout this journey. Explore your feelings. I am honest, I had to go talk to a professional to help me understand all of these new feelings. I had no idea you could grieve your old self. Know that you are not alone and that we can get through this, even on our bad days!

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Virginia Campbell avatar

Virginia Campbell

Thank you for the article, only someone who has this dreadful disease can fully understand the day to day challenges. It’s so good to hear someone else express what I have felt since being diagnosed. We will stand tall and fight as long as possible.

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Amy Baker avatar

Amy Baker

Virginia, thank you so much for your kind words. I too, feel like only we can truly understand the depths of this disease. I like to educate those in my life so they have an understanding but even then, it is a tad hard for them to understand how hard living with this disease can truly be. We got this! Much love to you :)

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Dana Tuck avatar

Dana Tuck

wow, you nailed it on the head!! i am always mourning for the old me. i really do not have a very good support system or alot of help. i am raising my 2 granddaughters ages 9 and 13 basically by myself and working full time. Lots of days i have to make myself get up and function whether i feel like it or not. I wear an invisible mask most of the time because i really don't want the girls to see or know how bad i feel. i do have a lot of Faith in God and he keeps me going.

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Amy Baker avatar

Amy Baker

I am so sorry to hear that Dana about your support system. We all NEED one! I can fully understand the wearing of a mask. I remember my 9 years old wanted to play and I was going through a flare, I could hardly move. But, I did. WOW, 2 granddaughters at one time, you are a warrior! :) However, I will tell you, I told my son how I felt, in terms, he could understand, and he turned out to be very helpful! My faith has continued to help me through and I know it will for you! Stay strong!!

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Linda Cassell avatar

Linda Cassell

This story really hits home for me. I often go thru the stages of grief, especially very angry....why me..... playing musical instruments was a passion for me and now it is a struggle. I tire very easily and cannot believe all the medication I have to remember to take. I used to be a nurse and now am a patient, But then, I think of all the people who are worse off.
A cure for this horrid disease would be welcomed and I know there is lots of research going on.

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Amy Baker avatar

Amy Baker

Linda, it must be hard being a nurse and then a patient. I can completely understand the medication piece. It is overwhelming. I went from someone who never took meds, not even maintenance meds. Now, I take 15 a day and 2 injections. I appreciate your honesty about the anger. I have to work on that also!

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Latarsha avatar

Latarsha

This article brought me to tears. Tears of my own realization & tears of support knowing there’s others struggling to HOLD ON as myself. Thank you so much for this honest, detailed truth and let’s continue to be a voice educating others about this disease.

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Amy Baker avatar

Amy Baker

This disease can feel so isolating at times. We are all in this together, near or far. Please always know, we are here for each other. The struggle is real! But, we got this...together!

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Monica McIntosh avatar

Monica McIntosh

Thank you for sharing your mental journey. These are all things my 32 year old daughter has educated me on since her diagnosis. The hardest part for us both is the lack of understanding or empathy for the emotional toll this takes. Praying daily for both a cure for all and for remission for her.

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Monica McIntosh avatar

Monica McIntosh

Thank you for sharing your mental journey. These are all things my 32 year old daughter has educated me on since her diagnosis 7 years ago. The hardest part for both of us is the lack of understanding or empathy for the emotional toll this takes on her. Thankful I can walk this road with her serving as her constant cheerleader and soft spot to crumble. Praying daily for a cure.

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Amy Baker avatar

Amy Baker

Monica, it is truly my pleasure to share! This website is a great resource for all things Scleroderma. I encourage you to learn as much as you can!

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Amy Baker avatar

Amy Baker

Monica, I have been extraordinarily lucky to have my mother walk with me through this journey! She is my biggest advocate and I love her for it so much. I am so happy your daughter has you to lean on. I am a mother also and want to encourage you to also feel your feelings regarding her diagnosis and to know, you are not alone!

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Pat Frye avatar

Pat Frye

After being an avid dance instructor with my husband dancing 5 days a week…. now unable barely able to walk and shortness of breath is overwhelming….
I envy everyone who appears to be pain free… for me it’s over 5 years of daily debilitating symptoms and pain… we must cry sometimes… we lost a lot….

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Amy Baker avatar

Amy Baker

Pat, I am so sorry to hear of your struggles. It is hard when we grieve all the things we used to enjoy! I am sending you love and light and hoping you will find yourself dancing again very shortly!

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ELLEN FOGG avatar

ELLEN FOGG

I woke up today feeling so alone and angry at the world. Then I read this! I am never truly alone. I have allies that understand. I could barely get out of bed because yesterday I was determined to wash the bathroom floor! Having someone completely understand the multitude of feelings surrounding this one task instantly made me feel better. I WAS able to do it! I did come up with solutions on how to do it without being able to bend well or having strength in my arms. The new Ellen is strong and resourceful. Today, I have to rest and get past the pain but I also have a clean floor that I cleaned all by myself. I have to remember the small victories. I will now go and admire my floor! Thank you so much!

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Amy Baker avatar

Amy Baker

YAY!!!! I am so so proud of you for rising to the challenge! Trust me; I totally get it. The fatigue and pain are overwhelming at times, and I want you to know it is ok to take a knee and rest when your body requires it. It is a great feeling when we can accomplish those tasks. You are strong, you are resourceful, and you are a warrior. Sometimes we don't feel very warrior-like, but we are not alone, and we can be there for one another! Admire that floor!

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Sharon avatar

Sharon

After fighting systemic scleroderma/ILD
for 16 years, I could identify with you mourning your old life. I struggle daily with accepting my new dreadful life and missing all I used to do easily. Starting O2 recently has set me back physically and emotionally. I remain angry a lot and despite trying to count my blessings with each grandbaby and happy occasion, I find myself jealous of others who will have a long life to spend with their family. The roller coaster of unstable PFTs have put me on the edge. The availability of meds are limited after trying them all over the years while my symptoms spiral out of control. I dream of a reset button that will bring the Old Me back! I appreciate you sharing your thoughts as I continue to fight and struggle at the same time!

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Amy Baker avatar

Amy Baker

Sharon, I, too, have found myself jealous of others living the life I had envisioned for myself. It is ok, and you are valid in having those emotions and feelings. I would like to gently encourage you to talk with your healthcare provider about those emotions. I did, and it helped me navigate some of the waters of this disease! I know you are struggling and fighting, and YOU WILL get there! You are a true warrior!

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Tobey Schwartz avatar

Tobey Schwartz

Your article was so spot on. I hadn't thought of it (the old me) in quite that way but that is so accurate. I was either in denial or blindly optimistic for a long time. I thought I just need to eat right, exercise more, find the right doctors, meds, etc. and I will get ahead of this thing. In the last year, as the disease has progressed, it has kind of hit me in the face. I realized that walker is here to stay, that fatigue can't be wished away, there are so many things I can't do now. My new motto "Adjust and Adapt" Thank you to everyone for sharing.

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Amy Baker avatar

Amy Baker

Tobey, I too have been blindly optimistic. Sometimes reality is a bit different but we absolutely need to stay positive! The new me misses the old me so very much. By changing my diet and taking my meds, I have been able to slow down the progression a bit. Thank you for sharing your feelings with all of us today! Sending you love and light!

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Mary D. avatar

Mary D.

What a marvelous article. I have never thought of it was where did the old Mary go. The terrible fatigue, breathing, and never knowing how the body is going to react are particularly enlightening. Thank you for writing this.

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Amy Baker avatar

Amy Baker

Mary, I agree the fatigue is terrible. I have tried to find alternative methods to cope but have found it is really just resting. Learning to cope with self-love and self-care has been the hardest to do. Thank you so much for commenting!!!

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Kathy avatar

Kathy

I did the same exact thing. I cried too because going through this you kind of feel a bit isolated. Scleroderma is not something you hear about often. I never did until I was diagnosed. It was a relief to hear the words to described the battle going on in my head and to realize I'm not alone or crazy, I'm trying my best to act "normal" realizing now that my normal is in the past.

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Amy Baker avatar

Amy Baker

You absolutely feel isolated. Our new normal is a blend of who we used to be with who we are becoming. I've shed a thousand tears trying to figure out who I am now but it is a learning process. I still struggle. But, we have each other!

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Kathy avatar

Kathy

Amy, knowing that you are not alone on this journey is comfort! Thank you so much for your article. It truly was a blessing for me to find it.

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Amy Baker avatar

Amy Baker

Kathy, you are most welcome! And, no, you are not alone. That's the terrible thing about this disease; we all feel alone until we realize so many of us understand. Sending you lots of love today and every day!

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Amy Baker avatar

Amy Baker

That is truly an amazing thing to say! Thank you for your kind words!

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Brooks Kelley avatar

Brooks Kelley

I was thinking of my mom tonight and took the time to do a little research on how things have changed. I saw your article. It touched me very much. I could hear her voice in it too. At least a ton of Amens!

As her caretaker, I watched my mother go through what you are feeling everyday. Keep fighting the good fight. My prayers are with you. But, you are so much better off today more than you can ever realize. Let me explain.

My mother fought it for over thirteen long years back in the 80s and into the early 90s before it took her. And it wasn't until the forth year of fighting it that she learned what even she had. She just knew that her body was doing things that didn't make sense. I just knew that she exhausted easily and wasn't feeling well.

Back then, there were no therapies the doctor could offer her. Only a few drugs that might halt the progression. None of which really worked according to him. The doctor even making the initial diagnosis coldly told her she would have only three years to live at the most. That didn't help her one bit. Nor me for that matter.

There wasn't even a support system she could find nearby us.

Today, there is so much hope today for treatments as medical science has improved the understanding of how to treat this awful disease. And families can research it on the internet and be more understanding too. Especially after reading a post like yours.

My mother was so scared when she got the news. There wasn't the internet or forums like this one. She was scared that any emotional encounter could cause it to grow worse. My then sister-in-law, who was a nurse, acted as if it was all in her head. My mother sheltered herself finding little support around her from family. It is really hard to reach out to family when even those closest to you don't believe you.

You have no idea how good it makes me feel that you can share your fear, pain and success here on this site as well as with your family. And, in sharing, you have helped make it easier for those who don't understand that fear to know what someone with schleroderma has to face everyday. Moreover, that means a caretaker might share this and get some relief too. Because, often, we are just as scared and uncertain.

The one thing I learned about this disease's treatment tonight after wandering around this site is that the future gets brighter and brighter everyday for those afflicted with it. And that brings me so much healing and hope for those who have it. It may not seem like it to you, but to me, there does seem to be light at the end of the tunnel at last. What a difference thirty years makes!

Blessings from a caretaker. I have faith in God that this is a battle you will win! After all, you are truly the daughter of a very special Lion.

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