Taking My Next Step Without Scleroderma’s Permission

Lisa Weber avatar

by Lisa Weber |

Share this article:

Share article via email
raynaud's home remedies | Scleroderma News | survivor's guilt | banner image for column titled

“Your life is controlled by what you focus on.” I read this Tony Robbins quote when I was diagnosed with scleroderma in 2014, and my takeaway was to focus on my strength and will to survive.

I came across this quote again, eight years later. Only this time, I realized I was still putting my disease at the forefront of my life. Each decision was calculated based on how my body would respond. Each choice was made with my diagnosis in mind. Scleroderma was still in control of my life. I was so focused on being one step ahead of it that I didn’t realize I was being smothered by it.

No matter how strong I was mentally, there wasn’t a day my thoughts didn’t revolve around my sickness. Even going to a restaurant included plans to combat the air conditioning and Raynaud’s war I would undoubtedly have. But why did I have to plan? My normal routine included storing extra gloves, blankets, and sweatshirts in all our cars. Just like putting on underwear before my pants, there was no need to plan and worry.

Although these things were routine, I was giving the disease more control, worrying about being one step ahead. And in some strange way, it was making me sicker, unable to escape and living “sick” all the time.

Recommended Reading
comprehensive care | Scleroderma News | diagnosis | banner image for

Learning to Embrace Life Changes With Scleroderma

Something needs to change

One Sunday morning, I was lying in bed for hours. I couldn’t think about anything except dreading work the next day. It was like being at the bottom of a dark and cold pit and looking up at the blue skies. I wanted to escape. But until that point, I didn’t know I was even trapped.

I knew I’d been unhappy for a while, but I’d never stopped to think about why I was choosing to stay on that path. I’d reached the highest level of success in my career. There was nowhere else to go. No professional growth. Just the same thing, year after year. I felt stuck, and I was miserable from complacency. Yet I’d chained myself to the job as if there were no other option.

I made excuses for why I couldn’t possibly make a career change. My left hand could barely close; I wore gloves indoors when the AC was too cold; sometimes I coughed too much. Each excuse took me back to my why: Who would want a sick human with an autoimmune disease on their front line?

I’m back in control of my life

Thankfully, something surged through my soul and smacked me back to reality. I could hear my inner thoughts and recognize them as what I call “victim thoughts” — the ones that hold me back for no good reason. Excuses! Being so consumed by the problems, I couldn’t recognize my abilities and gifts.

Pushing excuses aside, I began sifting through my triumphs. I’ve worked full time throughout my entire illness. Even when I could barely walk, I still showed up and crushed expectations. I adapted to every ailment and rose to every challenge. I didn’t even require more sick days than anyone else I worked with. Every day, I went above and beyond. Why wouldn’t someone want to hire me?

Living “sick” made me believe I was less than worthy. But in fact, it made me more empathetic toward others and more adaptable under pressure. My illness taught me to make the most of each minute I’m here and to be intentional with every choice. I’m a better person today than I was before my diagnosis.

I don’t know what the future holds, but no one else does, either. I can only go by my track record, and it demonstrates my ability to show up despite the struggles I face. I’m not just stronger than scleroderma, I’m a strong human — and so much more than my illness.

Living a better future

Since I smacked myself awake, I decided to shift my focus onto everything but scleroderma. I make decisions based on what’s in my heart. After that, I let my body tell me when to take a break, but I don’t seek its permission first.

This mental shift gave me the courage to grow professionally as well. After 21 years, I left my teaching position. Now I’m currently searching for my next career success — because I’m capable and worthy. The only person who doubted my abilities was myself.

I haven’t felt so alive in a long time! I’m still living with scleroderma, but it feels much smaller to me now, and less important to my future.

Life is short, and we all deserve a better tomorrow. No matter what “better” looks like to you, focus on who you are and not what illness you have. And don’t let the struggles determine your next step.

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.


Caroline Graettinger avatar

Caroline Graettinger

Hear! Hear! What wonderful and powerful guidance you've provided to us all, Lisa - Look back and focus on our triumphs! Thank you for sharing those thoughts and experiences. I'm excited to do the same.

Shiela Wright avatar

Shiela Wright

I read your column regularly. You are a true inspiration. Each occasion when Scleroderma (& Sjogren’s) cause me yet another setback, I think of what you have through over the course of this autoimmune behemoth’s relentless path and how you rise to the occasion. Thinking positive propels me forward. I do try to put this disease on the back burner and live an exemplary life, not get caught up in the pain, discomfort and other afflictions it wreaks. No one wants to hear complaints or constant talk of illness. I remain stalwart and thank you for your positive guidance. Shiela

Ellen F. Graham avatar

Ellen F. Graham

Thank you! Thank you! Thank you! I really needed to hear this. You put into words exactly how I have been feeling and living. I have printed this and plan to keep it handy to read whenever the "I can't" feelings com over me.


Leave a comment

Fill in the required fields to post. Your email address will not be published.