I write quite a bit about looking for silver linings, embracing joy where I can find it, and celebrating small successes. I embrace thankfulness and enjoy a positive attitude. But before we go any further, I would like to clarify something important.
It’s OK to experience and express negative thoughts and feelings!
It’s more than OK. In fact, I think it’s crucial. Acknowledging and experiencing the negative runs counter to a culture that, in its well-meaning quest to end suffering, actually shuns it and insists that positive thinking can solve all our problems.
What’s up with all the positivity? Is a positive attitude really everything?
Positivity plays a vital role in my life. It has allowed me to adapt to difficult circumstances. An optimistic outlook allows me to hold onto hope and encourages me to press on without giving up. I’m also pretty sure that it is easier for others to be around me when I’m upbeat than when I’m being negative, which helps combat isolation and loneliness. But a positive attitude does not ensure success, and it doesn’t produce results independently of effort and circumstance. And no matter how strong it is, it will not cure Ehlers-Danlos syndrome.
It will not keep my joints from dislocating, my skin from stretching and tearing, or my blood vessels from leaking. I can’t stop my genes from coding incorrectly, so expecting a positive attitude to end my suffering is unrealistic. And blaming a person’s negative attitude for their suffering is unfair.
Who is insisting?
I definitely feel pressure to maintain a positive attitude, or at least a positive image, but many times the demand comes from within. It could be partially the result of messages I’ve heard and internalized. I think the fear of losing control also comes into play. I don’t always want to think about the things that are happening to my body. I would like to be able to wish or think them away — it’s a socially acceptable delusion of control.
Unrealistic expectations that go unmet produce additional suffering. Ten years down the road, I don’t want to find myself sad and frustrated that my positive attitude did not cure my EDS.
Experience your feelings
I will still have EDS 10 years from now. As long as I’m still here and can still serve a purpose, that’s OK. I’m learning to feel the emotions. It started with a flood of relief that I finally had an explanation for my medical challenges. But then I slipped on disbelief and stumbled into fear and then fell into sadness. I was able to shake off the fear by acquiring knowledge, but I quickly determined there was no way to navigate sadness other than to go through it.
I give myself permission to mourn. I lost something valuable to me and it hurts. I allow that sorrow to move through so it doesn’t get stuck somewhere inside, only to leak out later. I can’t hide it under a smile I don’t really mean.
Don’t avoid ‘bad’ feelings
Sometimes I feel angry, and I’m not ashamed to admit it. Anger is a valid emotion that most of us are trained to suppress. We’re taught that it is destructive. In my estimation, anger is neither good nor bad; it just is. What I do with it determines whether it is constructive or destructive. Anger is a powerful, uncomfortable emotion for me, and as such, it needs to be moved through my system. It won’t let me hold it in, and I certainly don’t want it to burst forth without direction. I must handle it appropriately.
Appreciate your feelings, and use them as learning opportunities and tools for growth.
Anger can be a powerful motivator to affect positive change. It has driven me to fight for a better quality of life. Complacency, blind acceptance, and compliance are stifling. Like a satellite rocket thruster, a properly placed and metered push of anger got me out of a bad orbit and into a better one. I don’t want to rely on it to get me through the rest of my life, though. That’s where a positive attitude comes in.
By allowing myself to acknowledge, process, and properly release negative thoughts and feelings, I am freeing up space for a sincerely positive attitude. Equally important, I’m freeing up the energy to back up that attitude with action. A positive attitude coupled with action is productive.
Note: Ehlers-Danlos 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 Ehlers-Danlos News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.