Within the chronic illness community we speak a lot about the importance of visibility. We discuss the need to self-advocate, to have our rights heard, and the importance of speaking out against stigma, especially when you have an illness that has debilitating symptoms that impact our interactions with the world, but aren’t always easy to see.
There are so many invisible and disabling illnesses, both mental and physical, from disease such as migraine, genetic conditions, to depression and anxiety. However, speaking out can be very challenging, in order for these challenges to be overcome, they need to be recognized, validated and the person supported.
More often than not people with invisible illness have experienced the emotional pain of judgement and stigma, there are emotional “scars” often as deep as the “scars” of the illness. People with invisible illness are often fearful of continued emotional abuses, which can be extremely painful. They have heard things like, “you are a hypochondriac.” , “It is all in your head.”, “you have no purpose.”, “How bad can it be?”, “Why can’t you just get over it”, “you are just emotional”, “You are lazy”, “You’re wasting your life.” “You are whining or attention seeking”. Those living with invisible illness are frequently abandoned by those they believed loved them unconditionally. We have had our illnesses invalidated and judged when we have attempted to be honest about its impact. We are judged for not fulfilling expected personal or societal roles or obligations due to illness, but when we speak to the cause and the impact of our illness, we are seen as weak. We are taught being silent is stoicism.
The words we have heard, the people that have abandoned us, all of this pain becomes belief, belief that we don’t matter, that our story has no purpose and is not worth telling. Further, telling it will only bring more pain. There is belief that if we speak it will only be heard as complaining. These beliefs lead to feelings of shame and fear. Persons with invisible illness may be afraid sharing and being more visible will make them more vulnerable to further emotional distress. They often no longer trust anyone to hear their story and treat it with care.
It is a juxtaposition, we are judged, perceived as whiners, lazy, seen as dramatizing the impact of our symptoms and ridiculed for perceived “flakiness”, just by having an “invisible” illness . If we then try to bring visibility to our story and the impact of the condition itself, we are still vulnerable to being called attention seeking, dramatizing and our experiences are doubted. Whether invisible or visible we are vulnerable.
The need then is to change these societal beliefs, expectations and judgements, but how do we move forward to speak up after experiencing past stigma? How do we protect against further stigma? How do we manage possible further emotional pain?
First, we must support one another, specially when emotionally vulnerable. We must validate the very real feelings associated with experiencing stigma. We must not shame each other, for being at different places on the journey toward being visible and heard. We must change our own internal beliefs and then help others who have internalized the painful, stigmatizing messages they have been given. We must work together to challenge these internal and external narratives. We must celebrate small steps toward believing in their right to be heard, in their importance, and inherent worth and that their story has purpose. Finally, we must be the first caregivers of their story. We all have the power to motivate change both personally and on a societal level, it is believing it that can be the hardest challenge.