Coping with My Scleroderma Soul Fatigue

Kim Tocker avatar

by Kim Tocker |

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Scleroderma and the Ordinary Girl

Not so many years ago, around the time of my diagnosis, I recall having a major hissy fit. I had been invited to a wedding, and I didn’t like how I looked that day. My hair wasn’t right, and I just didn’t like the way my chosen outfit was hanging as I wore it. I spent most of the time leading up to the event fretting and fussing.

But the outcome of the entire day was that no one cared (or even noticed) how my clothes were “hanging,” despite my self-centered concerns and preoccupation with myself.

There have been many such egocentric outbursts over the years. These have ranged from inward feelings of hurt and entitlement when life didn’t always go the way I wanted it to, to outward displays of anger and disappointment toward others when they behaved in a way that I didn’t agree with.

I realize now that some of this was due to immaturity, but it was also an inability to understand that I was being a total prat. I think that I have been spoiled. Back then, I had been blessed with energy and vitality, as well as a life in which things came easily. I had managed to develop a functioning social persona that, while taking some energy to maintain, served me well when mixing with others.

The problem was that my energy levels plummeted when I became unwell. Fatigue is one of the most common, unmanageable issues in scleroderma, and there is very little doctors can do to help. This means physical exertion is difficult.

However, there is also a fatigue of the soul that happens with a terminal illness. I know it intimately, and I know in my bones that others who are seriously unwell also understand this fatigue. We become weary of our own nonsense and that of others. We realize that there is no time or energy for self-created dramatics any longer. We simply do not have the luxury of readily available energy to spare on these things, nor do we have the time left to be bothering with them.

Soul fatigue has changed me, as it inevitably would, of course. It has made me clean up my act. I have no resources to deal with my own petty and unnecessary negativity toward others and myself. That type of inner thinking has had to stop. It’s just too draining and is certainly never useful in any meaningful way at all.

I have also become much more difficult to get to know. New people may have the potential to become energy leeches. I need to maintain clear, impenetrable boundaries to covet and protect what little and precious energy I have available.

Sadly, my soul fatigue has also caused me to become hyper-aware of the innumerable amounts of nonsense people generate in this world. There seem to be many who desire power and control, and who are insatiable attention seekers, both at the level of common people right up to some world leaders.

There’s a hard edge that has developed around me, a protective cover, and I’m not available for other people the way I used to be. The world may not like the cynicism I have developed, however, I don’t care to be concerned about that any longer, either.

Has my soul fatigue brought about positive or negative changes in the long run? I’m still not sure. Perhaps those looking at me from the outside would say my resulting self-protection looks like I am unavailable and intolerant.

However, on the inside, I know I have become more careful about allowing any negative and trivial thoughts about myself and others in my head. I have become less concerned with drawing attention to myself to gain approval and more concerned with just enjoying simple things for the time I have left, however long or short — such as nature, the seasons, the unwavering love of my husband and family.

Is soul fatigue with scleroderma a help or a hindrance? You decide.


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 Services, and are intended to spark discussion about issues pertaining to scleroderma.


Chris Nickerson avatar

Chris Nickerson

AS regards 'how much time you have left' I was diagnosed with Systemic Sclerosis Dermitomyositis Overlap in 1974 or earlier. It took many visits to the former Middlesex Hospital (now UCLH) before I was diagnosed due to my skin symptoms. I was diagnosed by the hospital's Consultant Dermatologist.
I am now 74 and still going strong. Until what age do we hope to live?
Chris Nickerson

Helen Diachuk avatar

Helen Diachuk

Thank you Kim. Such a fabulous and gentle expression of how I often feel, and appreciate hearing such wisdom and endorsement. Well done and thank you again Kim.

Kim Tocker avatar

Kim Tocker

Thanks Helen, your encouragement is very much appreciated. Warm hugs.

Dina Scarber avatar

Dina Scarber

This is exactly how I've been feeling lately and it is bringing me down everyday. I hate sitting, but half the time I do something and then the horrible fatigue hits. The realization is here that I am no longer the person I use to be and I don't want to be the person I am. I want to cry most of the time. My family just cant see my reason for my frustration and they truly try. I feel trapped in my our mind and body. I want to do things with them that I cant do. I went on Go Carts yesterday, and then cried and argued with my husband that he doesn't understand. How could he understand, I don't even understand. I feel so lonely and helpless. I feel lazy and exhausted all the time. I'm usually a go getter and a positive person. The one who does it all for everyone and loves it. It seems everything is a mountain I cant climb and I don't want to even try because of the result in the end is too much to handle emotionally. Anyway, just venting, your note hit home with me. Thanks for letting me vent.

John De La Mare avatar

John De La Mare

Thank you Kim. You explain this so well, I was diagnosed with scleroderma 3 years ago and coping with fatigue trying to explain to friends/ family how you feel its not easy for them to understand. You have explained this well.



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