Sometimes having a chronic illness can be like walking a lonely road…especially when people react to you in negative ways because they do not understand your illness.
I find myself these days often between two extremes: some on one end, over-protective and treating me like I am a helpless victim, ready to break and fail at any moment due to fragile health; and at the other end, some who are stressed by my very presence to some degree, because they fear what may happen if I have a medical emergency at some point while with them (read: seizure fear).
In the middle is me, just quietly plodding on and struggling to re-establish my personal balance, physically, spiritually, and mentally. The one end makes me feel suffocated, misread, and trapped, while the other end makes me feel like a burden, misunderstood, and something to be kept isolated for fear of causing stress. Both extremes create stress in me, and cause me personal emotional pain and frustration. The catch-22 is that this very stress reaction created in me can actually manifest the health crises these two ends of the spectrum fear they will see in me.
So – how do we deal with these extremes? Frankly, I wish I had a magic recipe for this. (Hmmm…I wonder if Hermione Granger is available to consult??? Maybe I should call up J.K.Rowling to ask.)
Here are the ways I have found that help me deal with the stigma and bias caused by chronic illness (especially seizure disorders):
1. Cultivate your compassion.
Be compassionate with yourself as well as the person creating the stress by their reactions. That person may not understand how their behaviour is affecting you. Choose to recognise that the person has a fear, and their fear is their issue – not yours.
2. Remember, you are NOT your illness.
Remind yourself that you are not defined by your illness, no matter what anyone may think, say, or feel. Only you can define who you are and what you are capable of achieving.
3. Practice non-attachment.
Keep a smile on your face and turn the other cheek. Do not allow your ego to become attached to anyone else’s fears or labels. Listen with an open heart where possible and remain true to yourself, non-attached to others’ issues.
4. Walk away if need be.
If the situation persists and creates increasing stress in you, you can walk away. You are not defined by other’s fears – don’t allow them to take hold. Choose to walk away.
“Believe nothing no matter where you read it, or who said it, no matter if I have said it, unless it agrees with your own reason and common sense.” ~Buddha