By Rebecca Zook
Recently, I rejoined a Facebook group for common variable immune deficiency (CVID), which is my immune deficiency, and I kind of wish I hadn't. Since this is a closed group, people are much more open about their problems, and I was just about in tears reading the posts. People having to choose between paying their mortgage and paying insurance and thinking their families would just be better off without them. Losing insurance means losing the antibody infusions, and no one can afford them without insurance; for many it's still a struggle with insurance. Right now, a major insurance company is forcing patients with a CVID diagnosis to cease treatment for four months in order to "prove" they still have the illness. It's one week past my normal infusion schedule, and I'm in pain and sick. Four months could kill a person! They are also just refusing to cover the treatments for many altogether. Insurance companies deciding treatment, not doctors.
Then, there are so many who have family, friends and spouses who think their illness is not real or that they are somehow causing the problem by not eating right or not taking the right supplements. They accuse patients of just being lazy or stupid. Some have family members who have not spoken to them for years just because they are sick - because they don't understand the genetic nature of the illness or the variableness of the symptoms. The online community is all they have in the way of emotional support. Many are too sick to work regular jobs. A lot of us have secondary autoimmune conditions which are worse than the primary immune deficiency, and/or they have cancers. They are barely surviving. One bad illness can wipe you out financially. Imagine one that is lifelong and expensive to treat.
I want to thank my husband, my family, my friends, my coworkers and my doctors for believing. For not making me feel this isn't real and for the understanding and support. Coworkers stay away from me when they are sick and are understanding of doctor appointments. Friends insist on accompanying me to appointments to provide moral support or have lunch with me during an infusion. My husband has learned to devise meals that I can eat and are delicious. He does the vast majority of the cooking. He is also there for me when I occasionally indulge in a bout of self-pity. I appreciate this so much. It means everything. I am a strong person, but it would be so much harder without your support.
I am thankful I can still work full time and function in the world, though I have to watch my day-to-day energy expenditure. I have a great job - a creative, challenging job - that I enjoy with good benefits. I can sell my paintings for additional income (again, something that is already a passion for me). I have a house that is paid for because my late husband, Tom, was adamant about having enough insurance to cover it if something happened to either of us. I make enough money, so that my husband, Ed, has been able to go back to college and pursue his passion, and he is happier because of it. I have people who love me. I am in a much better place than so so many of my fellow zebras. I also know I could lose it all in a blink. That I am walking on a wire and doing everything I can to not fall.
The Zebra painting (pictured) is sold, but appropriate since those with rare diseases refer to themselves as zebras after this common saying in the medical community: "When you hear hoofbeats, think horses ... not zebras."