Since it’s Primary Immunodeficiency Awareness Month, I thought I’d talk more about my own experiences and how I have gathered the strength to keep going since my diagnosis.
These past few months have been some of the worst of my life. As I discussed in January and February, I was diagnosed with Common Variable Immune Deficiency, a rare and severe disease, and my life changed drastically. I was in the ER twice in the past couple months. This month alone, I had to spend over $1,000 on medical bills. And I still can’t get access to the treatment I need because my insurance company doesn’t want to pay for it. I don’t qualify for need-based assistance paying for it through the manufacturer, either. I’m just over the income limit, and I can’t afford the uninsured rate. Aside from regular scans to check for cancer and having to inject myself with the plasma of strangers regularly, I will be able to lead a relatively normal life. I won’t get sick as often. I’ll have more energy. I’ll sleep better. I’m ready for it. But right now, I’m in limbo. It feels awful.
I’m fighting. I’m fighting really hard for my life. I keep getting sick, over and over again. I’m losing money from having to miss work, and even with insurance, every doctor’s visit is at least $50. I’m sick of being sick, and I feel beaten down. Most of the time, I feel some hidden strength rise up and push me forward, but some days, I wonder why I’m bothering to fight. That’s when I need to turn to the people who keep me strong.
If I’ve learned one thing from all this, it’s that you need people like these in your corner:
Someone who’s been there before. The first person who keeps me going is my cousin, Vicky. Vicky is a talented artist and a smart, strong person. She has Cushing Syndrome, along with a myriad of other disorders that forced her to give up a promising career in set design. She’s currently selling her work on Etsy. (Check out her shop here!) There’s a lot of days when she can’t get out of bed and do anything. Sometimes her adrenals go out on her, and she winds up in the hospital. She lives far from me, and it kills me that I can’t see her. But we speak often. I call her when I feel like I can’t go on, and she reminds me how strong I am. She tells me I can do it. She believes in me. And before we hang up, she makes sure I believe in myself. She recognizes how I’m feeling because she’s been there, too.
- A partner, romantic or not, who you can be vulnerable with. Another person who gives me strength is my partner, Alex. We’ve been together about six years. She’s been with me since I started getting really sick. She’s in medical school, and she’s watched me get treated poorly by doctors. She helped me find better ones. She’s stayed up late into the night researching my symptoms. Since people with my disease get frequent infections, she helps me identify early signs and get treatment fast. She knows how to calm me down when I’m scared or having a dark day.
Someone to distract you and remind you to have fun. Of course, my writing also keeps me going. That’s a talent I share with my mom. Even when I’m so depressed I can barely move, I’m driven forward by the narcissistic belief that someone needs to hear my story and that people will like the books and stories I write. (I write thrillers and horror when I’m not writing for work or blogging here.) My mother will always be there to guide me through the process: getting an agent, reaching out to journals, and letting me know how much she believes in me and my craft. She was there to comfort me at every scan and biopsy and immediately afterwards to distract me with coffee and conversation about books.
Some people follow mantras, but apparently, I’m driven forward by these incredible women and our belief in each other’s strength. They remind me I don’t have to apologize for myself anymore. Whenever the world gets me down, they remind me who I am. I’m stronger than I look, and I don’t take anything lying down anymore.