The Marvelous Transformation. Emily A. Filmore
myself, but my dark secret was that I was always one step ahead of being fired for absences. If it wasn’t one aspect of my illness, it was another; I started thinking I was making it up myself. I was twenty-two years old and barely able to function.
The Effect on Your Family
People talk about how chronic illness tears families apart; this can certainly be true. It is stressful to feel sick all the time, and I know how stressful it is for my husband, Scott. Even on days when he has a project due at work, I have to call him, crying about how badly I hurt and how I cannot get out of bed to make lunch for our daughter. He comes home to care for us, despite the inconvenience.
Or the days when there isn’t anything wrong except I am so fatigued that lifting my arm feels like a full workout. Scott steps in without fail and takes over everything in the house. Consider the heap of medical bills we incur every year that he somehow finds a way to manage. Even though we have insurance, with deductibles—which I’ve used up by January each year for the past eight years—we are never without an overwhelming amount of medical debt.
There are times I’m sure he would just like to come home from a long day at work to a normal stay-at-home wife and mother, a clean house, and a ready meal. I bet he wishes he didn’t have to do the dishes because my hands are too weak and sensitive to the hot water; carry the laundry up the stairs or vacuum because I am not strong enough; haul out the trash; or perform any of the dozens of chores I am unable to do even on my best day.
I watched Scott go through our two miscarriages. Yes, they were likely due to autoimmunity, as the body tries to eliminate the fetus in utero, attacking it and cutting off its flow of nutrients because the body sees it as a threat to my health. It’s hard enough for me to go through a miscarriage, but watching my love lose his children at the same time, too, and knowing it is because my body failed to carry them—there aren’t words for the pain and the guilt I feel.
Sage, our little girl, is a miracle. She is here by the grace of God, my sheer will, a dedicated high-risk prenatal doctor, my acupuncturist, and some immunosuppressant drugs. Together we coaxed and cajoled my body into holding on to her and bringing her into the world—safely.
Loved ones of people with chronic diseases take on a lot more than they bargained for. My husband knew I was sick, and he chose to love me anyway. I didn’t sugarcoat it when we were dating. I didn’t yet have a specific diagnosis, but I told him what life might be like with me. He chose to be with me anyway. He agreed to be there for me when I couldn’t take care of myself, and he lives up to that promise every day. It is not easy for me to watch him make those sacrifices.
Expect Everything to Be Affected
Even prior to diagnosis, autoimmunity played a key role in my relationships. It affects everything, from your everyday decisions to your emotional stability and trust in yourself and your partner—even your sexual relationships. A former partner would carry me up the stairs of my apartment because my hips and legs were so weak I would have had to crawl if I’d been alone. You don’t know vulnerability until you become that dependent on another human being. At the same time, you are also gifted with the beautiful opportunity to feel loved and cared for on a different level.
It can be hardest for your parents. I hear my dad cry on the phone at any health news, both good and bad. I watch my mom wrestle with worry over every little test and appointment. As a mom myself, I know how helpless my parents must feel watching their “baby” in pain and not being able to fix it. They, too, have done everything they can to help, sometimes to the point of smothering me.
Friends have played a huge part in enabling me to continue living in a way that resembles normalcy. Yet they are the first to suffer the consequences of broken promises and broken dates when I cannot go through with plans.
Autoimmunity doesn’t just happen to the person who’s blood tests, magnetic resonance imaging (MRI) tests, electromyograms (EMGs), and biopsies turn up positive for the disease. Autoimmunity also happens to families, friends, and coworkers. With this book, I want to honor not just “us” who are the patients but “us” who are the people—the community—who help us patients keep going.
I have often wondered whether death would be a merciful escape and hear this from other patients as well. Perhaps you have even been there yourself. But I promise those moments are fleeting. People around me have helped me decide to keep going in the darkest of hours, and I hope this sharing of my experiences will help you decide you can keep going as well.
What “You Create Your Own Reality” Means
As hinted at in Neale’s quote, the idea that we create our own reality has been misinterpreted to imply that if only we are strong enough, we can cast disease from our bodies through thought alone. Anyone who has suffered from autoimmune disease knows the callous ignorance underlying such claims. What creating your own reality really means is to cultivate your ability to create and take responsibility for the mental environment within which you operate, thereby ending your emotional suffering so that you can face your disease head-on—with acceptance, strength, and laughter. It is not meant to cause you guilt or shame.
When I stop feeling angry about my disease, my whole world changes. It doesn’t mean that I am physically healed or that the disease is gone, it means that I find ways to appreciate my life as it is. Sometimes I have to put “mind over matter” and be happy with my life, even if my body isn’t performing the way I wish it would.
There are ways in which my life has been enhanced because of my disease: I have become someone I like much better than the person I would have been if I hadn’t been so challenged; and I have established a deeper connection to divinity because of my experiences with this illness. Now I understand that having a shifted reality (diagnosis) doesn’t have to equate to suffering (a decrease in the quality of my inner landscape); I can choose happiness.
This book won’t heal your disease. But it will help you heal your ideas about the disease and find ways to love your body and your life, sometimes despite the disease, sometimes in celebration of it—and often through humorous reflection on it.
Creative Tips for Empowering Yourself
• While the diagnosis stage is scary, remember you are still the same person you were before. Whether your diagnosis is recent or not, remember you are not your disease; you merely have it. Say, “I am a person with these symptoms,” or “My body is healthy, whole, and happy!” By doing so, you maintain your own identity and remember that your life is not controlled by illness.
• Find one thing to laugh about today.
• Pick one thing you did today, however small, that you couldn’t do yesterday and say “thank you” to your body.
• Replace anger with acceptance and gratitude. Say, “It’s okay that I can’t do everything I want to do; I will celebrate the things I can do.”
• Repeat after me: “I can be happy no matter what is happening to my body because I am a beautiful, wonderful being, and I am alive!”
Caregiver Tips
• For any parent, spouse, significant other, or close friend, the beginning stages of diagnosis are scary—know you are an important part of your loved one’s journey.
• To be supportive of your loved one, listen to him or her, accompany him or her, be understanding, and realize you don’t have to “solve” everything to help.
• Just being there is often enough.
Create Your Own Marvelous Transformation
Take your journal and spend a few minutes reflecting on what you’ve just read. Let the following questions guide you in processing your own truth and emotionally charged experiences you may have been reminded of through reading my story. Thinking and writing about these ideas and any positive insights you have gained from this chapter will help internalize and solidify your own transformation:
1. What situation