I’m Learning to Stand Scleroderma Strong

I want to write about a strange little topic today that some may find uncomfortable to read. I am sure it is a theme that those without a serious disease also can identify with, but I think that being chronically unwell can magnify the entire matter.

So, for those of you with scleroderma, do you remember the first time you finally went to a doctor who heard you, recognized your symptoms, ran the tests, and put two and two together? Do you recall that feeling you had when finally you felt “seen” — not just seen for an appointment at the doctor’s office? The doctor understood you enough to comprehend your daily struggles and know that it was important to find out what was wrong. Remember that feeling of really being “seen”?

In my opinion, the experience of another human somehow understanding what it is like to be you has a power unsurpassed by much else. It means that your experience is validated, but most importantly, that you are not invisible. It means you matter and are not a “nothing,” because feeling as though you are a nothing is the stuff depression is made of.

I believe that anyone, whether well or otherwise, has a fundamental need to be seen. However, for those afflicted with a rare disease that can be misunderstood by even health professionals, experiences of invalidation happen much more regularly. Therefore, we are more open to experience, at worst, times of devastating loneliness and, at best, an underlying and constant gnawing feeling that people don’t “get” us. 

My feeling is that it is really important to acknowledge that this actually happens. However, most importantly, a paradigm shift may be necessary. Other important truths about this phenomenon are just as powerful and should be emphasized.

On those exceptional occasions when we are “seen” for fleeting moments by others, it is almost as if a brief window has opened. Perhaps for just an instant, someone else actually understands. These opportunities are extremely important, because even in that small snippet of time, the effect is powerful and can be enough to carry us through another flare, procedure, or bad day. Support from others is so important and can fuel us onward.

However, my belief and experience are that at the end of the day, the truth is that no one really knows me better than I do.

A source of comfort comes from within, and finding a way to stand strong in my relationship with myself means I am not at the mercy of others to constantly validate my existence. Understanding that I need to take responsibility for nurturing a strong belief in my own disease experience has been very uncomfortable to acknowledge. It has been easier to rely on others to validate my scleroderma struggle rather than myself! While support from others is important, support from within is fundamental. 

I have been working at finding ways to “be there” for myself. Every day, I’ve tried to write in my journal and adopt a much kinder inner dialogue. I’ve even sung songs to myself that affirm my existence (in private when no one else is home; “True Colors” is a favorite, but don’t tell anyone, OK?). I’ve been reminding myself that I know myself better than anyone else and that my pain and difficulties are real. I try to remain standing strong in my reality.

The strange and lovely miracle that comes from doing this is that my belief in myself actually seems to project outward to others. The confidence and surety of my struggles, pain, and anything else I want people to “see” undergo a transformation. They suddenly become real and tangible to the world simply because I know them to be real and tangible for me.

I’m feeling less invisible. My truth is becoming much clearer to others, and my presence and experience more valid to myself. 

Sometimes it is better not to work from the outside inward, but rather from the inside outward.

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