The greatest sadness

sadThis is hard to write but maybe it will resonate with others who live with chronic, long-term conditions or disabilities. Or with those close to them.

The greatest sadness I have felt over these past 12 years is caused by the distance chronic illness creates between me and others. When illness strikes, our expectation is that there is always hope of a ‘cure,’ of ‘getting better’ and ‘back to normal.’ As treatments repeatedly fail and nothing changes, and the realization dawns that this is maybe something that will not get better, gradually those surrounding the ‘patient’ (a misnomer, if ever there was one!) have to protect their own feelings. Every person has his or her limits and eventually those limits are reached and cannot be stretched further. The sense of powerlessness becomes too much.  Life goes on, it has to be lived, and so the chronic condition of that loved-one is accepted for what it is and all the family members and friends move on to new horizons and a new ‘normal.’ Of course new challenges and experiences will also preoccupy them and claim their energy – such is the reality and the beauty of life.

This is all perfectly natural and understandable. One cannot live constantly with distress and loss. Yet that is what the person with a chronic condition must do. We must live alongside those we love and whose friendships we cherish, and we must enter their ‘normal’ and not get upset when plans cannot include us or we hear about events and news of which we are not part. We must show joy and sympathy, we must celebrate and commiserate, we must pretend we are part of normal life.

Yet deep within we carry the constant distress of what life is like for us. As the years go by, that constant distress is buried deeper and deeper until it is part of us and only us. We have gone beyond the understanding of most people and we cannot blame others for this distance between us – for that would not be fair. It is no-one’s fault.

From time to time the distance lessens and the gap closes. We are surprised and blessed by the understanding of gentle and sensitive souls who are willing to momentarily enter into that deeply buried distress within us. I am fortunate enough to have experienced this company of healing angels – I so cherish that and hold it inside my broken heart with gratitude and love.

3 thoughts on “The greatest sadness

  1. Bless your heart, Julia!! Is there any way I could do something to help? I don’t have any students on Fridays . . . . . If there is something I could do, please let me know!!!! Meanwhile, BIG HUGS!!!!! Lindy oxoxoxoxoxox


  2. I have forwarded your article to a friend who is living with MS, it resonated with her and gives me a little understanding of her life, thank you for writing it.


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