One of the themes that has been suggested for Invisible Illness Awareness Week this year is “Defiant Hope.” But what is defiant hope? Well, to me, it is akin to “hoping against hope,” believing in something most people would say defies all odds. It is finding a way to face a future that is, perhaps, mere survival at best. For those of us who live with serious invisible illnesses, such as the Gastroparesis which seeks to destroy my own body, it is a way of life.
Beyond aspiring to survive the day, those in my community seek defiantly, rebelliously, to live a full and meaningful life in spite of this cruel disease. We hope for strength and stamina to face the pain, nausea, and fatigue that we daily confront. We hope to be able to push our symptoms to the back of our minds and deep inside our bodies and somehow be able to complete the tasks of the day, or, on a particularly successful day, attend some sort of outing or event. We hope to have the courage and will to interact with our families and friends in meaningful ways, show up for our jobs, attend church, and join in the other many activities we participated in before our diagnosis. We hope to enjoy a bit of life instead of simply enduring it.
But rather than further define defiant hope, I offer the following illustrations. Defiant hope, for those of us with invisible illness, is:
*the woman who enrolls herself in college courses, though she knows she will struggle greatly to attend classes and complete the work, because she wants to fulfill her dream of creating a nonprofit that will benefit others in the community
*the mother who rises every morning and seeks medical answers for her two children who, like her, have been afflicted with this devastating illness, despite being told time and time again that “nothing more can be done”
*the husband who, because his wife cannot bear to lose him, fights back tears and musters up the courage to drive himself to the local ER where he knows (almost) beyond a doubt they will mock, accuse, and offer little assistance
*the mother who undergoes surgery after surgery, sacrificing more of her body and soul each time, so that she can survive a little longer and take her children to their baseball games and NASCAR races for a few more seasons
*the father who drags his tired, beaten body to work every day and faces the less-than-understanding glares of his co-workers and superiors because he is the sole income-earner and has small children at home, and who dreams he can get through this day, this month, this year, for their sake
*the woman who sends cards to others in her community, despite barely being able to hold her head up, because she wishes to add cheer to their otherwise dreary and lonely days and believes beyond reason that this simple act of kindness will give others cause to go on hoping
*the daughter who pulls herself away from her mother’s hospital bed and forces her own tired and failing body to post awareness articles, memes, and encouraging words on our social media sites because she believes this sharing will enlighten others and spur them into action that will one day save us
*the husband who spends his life-savings and sacrifices his comfortable retirement plan to take his wife to the newest, best treatment facility in the blind faith that the doctors there will know of a new or more effective treatment that the other facilities somehow overlooked
*the child who begs her sick and down-hearted mother to please try a bite of the food that has failed her a thousand times before because, “Mommy, this time might be different”
*the wife who books a flight for her family’s next vacation in a faraway paradise, though she cannot for the life of her figure out how she will make it to the airport, let alone survive the entire two weeks of adventures, and who knows she might have to cancel before all is said and done
*the cousin who begs, pleads, and ultimately nearly forces his loved one to take her medicine, regardless of the fact that it is obvious to both of them it is no longer effective, and who picks her up and carries her to the hospital rather than giving up when it does indeed fail
*the advocate who wills her frail, weak soul to pick herself up, seat herself at her computer all day long, every single day (as she has done for the last nearly 3 years), writing, e-mailing, tweeting, and calling every medical professional, politician, government agency, and media source she can find about her illness, despite rejection after rejection, because she defiantly believes that someday, someone will help her make the “invisible” visible
Yes, my community defiantly clings to hope. Beyond logic, we hope to someday make our invisible illness visible to those around us who do not yet see. If they are not willing to open their eyes to us, to our illness, perhaps they will open their ears and hear us. If we are loud enough, persistent enough, and refuse to go unnoticed, maybe we can one day make ourselves known to them. So, we continue our rebellion.
We defiantly hope for a cure and anticipate that medical professionals will gain understanding of our illness, that we will no longer be viewed as hypochondriacs or drug-seekers, that we will be given the medications and treatments we know to be helpful for our condition, that our pain will be adequately addressed, and that we will be guided toward options that can provide us with better quality of life. Further, we defiantly expect that the FDA will not deny us those options, that our insurance companies will cover them, and that pharmaceutical companies will search diligently for safe, effective treatments and refuse to charge outrageous prices for our life-saving drugs.
We defiantly hope to be financially secure despite the costs associated with our illness. We hope we will not lose our jobs, homes, and possessions due to the effects of this disease. We hope, one day, Gastroparesis will be treated as the devastating disability we know it to be, that our government officials will recognize the seriousness of our situation, and that we will be granted necessary research dollars and policies beneficial to us.
But above all, we defiantly dream of a day when we will be understood, appreciated, and cared for by all those who surround us and impact our lives. We long to see our children grow up, grow old with our spouses, realize our dreams and goals, and once again enjoy life without pain, nausea, and fatigue. We defiantly hope for a full life, a bright future, and an end to our seemingly ceaseless struggle to merely survive. I defy you to take that defiant hope from us.
Please Note: Invisible Illness Week is September 26-October 2, 2016. You can help raise awareness by posting your stories, memes, pictures, and articles on all social media sites and by using the hashtags #InvisibleIllness and #IIWK16 on Twitter. If you would like to join an event, Mental Health and Invisible Illness Resources is hosting the following on Facebook: https://www.facebook.com/events/552105701663138/. Thank you so much for your time and attention!