Source: Katie Willard Virant
Over the past year, we have seen a dramatic increase in people coming forward to talk about the sexual assaults they’ve experienced. The hashtag #metoo has accompanied these personal stories, and it’s been a powerful tool in creating and sustaining momentum of this movement. “Me too” implies both context and connection. Sexual assault is NOT an isolated incident; rather, it’s an all-too-common occurrence. Thus, there exists an entire community of people who share this experience and readily can empathize with one another. But the #metoo movement goes a step further in insisting that the whole world look at and acknowledge the community of survivors. It is this fierce insistence that the reality of survivors be seen, heard, and felt that is changing the culture in real time.
We who live with chronic illness can learn something from the #metoo movement, which is bringing to light realities that previously have been taboo to discuss. Survivors of sexual assault have feared being blamed, shamed, disbelieved, and re-traumatized by telling their stories. Similarly, many people living with chronic illness have feared being open about our experiences because of distancing and hostile responses from people who have not walked in our shoes. Can we learn from the bravery of the #metoo participants and speak of our painful experiences in a world where many wish we would stay silent?
Responses We Face: Blamers, Shamers and Disbelievers
“You’re too stressed out.” “You don’t eat right.” “You have a bad attitude.” “Pray more.” “You’ve always been fragile.” This group of armchair physicians is pretty certain you could lose your pesky diagnosis if only you’d follow their advice. They are convinced that your disease is a problem of your own making that you could fix if you’d just do as they say. Their frustration with you for not taking their advice is matched only by their smug assurance that – due to their own healthy living – chronic illness will never dare take root in their bodies.
While they may not overtly blame you for your illness, the shamers do believe that it’s your responsibility to keep your suffering to yourself. They do not wish to hear about the unpleasantries that your illness causes. The shamers express annoyance and discomfort when confronted with your reality. They change the subject or they minimize suffering with breezy comments like “Well, be grateful you’re alive!” and “That which doesn’t kill us makes us stronger!” They may try to jolly you out of your feelings about your illness, and they will become increasingly frustrated if you insist upon hanging on to your grief and anger. Like the blamers, they are certain they would never find themselves in your situation: Should they develop an illness, they perpetually would be cheerful, gracious and an example to all.
“How bad can it be?” “The pain isn’t THAT severe.” “I think you’re overreacting.” “I get stomachaches/headaches/fatigue, too.” The disbelievers will not allow themselves to comprehend the magnitude of your suffering. It is more comfortable for them to deny your reality than to face the truth that illness can derail a person’s life.
The Necessity of Resistance
It’s easy to shut down in response to blamers, shamers and disbelievers, as they are closed off to experiences that profoundly shape us. In their refusal to take in our truth is a need to control our experience in a manner that invalidates our very selves. Blamers, shamers and disbelievers are so toxic that we who live with chronic illness often internalize their distaste for our illness and censor ourselves. We find ourselves editing and omitting our illness experiences from conversation for fear of disapproval. If this is our strategy, we will become isolated from others and ultimately from ourselves. As the #metoo activists have demonstrated, upending the status quo requires that we do things differently.
Find Your Tribe
Blamers, shamers and disbelievers would have us believe we are alone in our suffering. This is a lie. There is a whole community of people who live with chronic illness; there is an even wider community of people who suffer in a myriad of ways. It is essential that we find the people who “get” us and who are open to hearing and accepting our stories. National organizations devoted to support and advocacy for various illnesses are a great place to start. Call your local chapter and request information on programming, support groups, and events that benefit people living with your illness. There is an unspoken camaraderie among people whose illness experiences are similar to yours. To feel understood by a compassionate gaze, a quick squeeze of the hand, a knowing nod: these are invaluable ways to increase your belief that you – illness and all – matter.
Family members and friends who do not share your illness may not understand you. But you can help them try. Ask them to listen. Understand their fear of being confronted with experience that is foreign to them. Should they resort to blaming, shaming or disbelieving, bring this to their attention. For many people who have not lived with illness, it is uncomfortable to open their minds to the reality of it. But if they want to really know you, they will have to bear this discomfort. I hear many people with chronic illness say that they avoid speaking of their illness to family and friends because they “don’t want to make it awkward.” What if we name the awkwardness as part of the process of being vulnerable? Hard conversations are often the most fruitful ones. To openly acknowledge that it is difficult both to speak of and listen to illness narratives can itself ease the awkwardness.
Distance Yourself from Non-Supporters
There will be people who will never understand your illness experience. There will be cruel people who mock individuals with illness; there will be people who find your illness so tiresome that they’d rather not engage with you; and, yes, there always will be blamers, shamers and disbelievers. There are people we never will change, no matter how patient we are and how many strategies we try. We need to protect ourselves from the damage these people do, whether it’s removing ourselves from their presence entirely or narrowing our relationships with them to exclude our illness narratives. Walking away can be an intentional and self-loving activity. We may wish simply to remove ourselves from people who do not support us, or we may wish to explain our decision. Either way, make sure to process your feelings of loss with members of your tribe.
Be a Supporter of Others
We who live with chronic illness have an experiential knowledge of suffering. We are well-situated, then, to open our minds and hearts to others who suffer in a variety of ways. Our experience gives us knowledge, and knowledge is power that can be used to create radical change. We are situated to be both helper and helped; giver and receiver. In claiming our intertwined vulnerability and power, we see ourselves as innately deserving of acceptance, dignity and love. We need not hide the parts of ourselves that some may find unseemly; rather, we can create and sustain a proud, safe space for that which has been unspoken for far too long.
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