Delaney's Voice

The Three People You Need in Your Squad When You’re Diagnosed with a Difficult Illness

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.

The Immune Deficiency Foundation is an organization that helps people like me get the treatment we need, connects us with specialists, and can even help us find other people just like us to talk to when we’re going through a hard time.

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:

  1. A pencil-on-paper self-portrait of my amazing cousin, Victoria Matthias. Vicky, you give me strength.

    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.

  2. 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.
  3. My mother and I. She takes me out to lunch often, and I go visit her whenever I can. We also both go to a local writer’s group at least once a month. My mom is, and always has been, one of my best friends.

    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.

3 replies »

  1. Delaney, this is beautiful. It’s SO important to have people on your team that you can feel safe being vulnerable with. The world is an unkind place, especially to people who suffer or struggle, because so many people don’t want to confront the fact that one day they could be the ones struggling and they feel if they ignore it and don’t think about it nothing will ever happen to them. This is, of course, head-in-the-sand nonsense, and it does so very much harm. I think if, when we are in a good mental and physical place, every person tries to find just one or two people who are struggling and need our help, and just commit to being there for them, the world will be a better place. And I firmly believe that what goes around, comes around, and that the help we give will return to us in manifold ways. It’s so hard for so many of us to ask for help because of issues with pride and dependence/independence, but we all need to find “our people,” the ones who are willing to be all in. I once read a story that said that love is not 50/50, it’s 100/100. We have to be willing to be there 100% for the people we love, because there will be days when they can give absolutely 0. And then on days when we can give 0, maybe they can give 100. Or maybe they can only give 40. And that’s why we have multiple friends–to have others we can turn to for that other 60. You’re correct to identify how we need different types of people in our lives, too. I’m married to a doctor, and I honestly feel for people who do not have a relative or dear friend who can advocate for them medically. I have a great mom who is really my best friend, and she distracts me when things are bad, too. And then there are my social friends, my internet friends, my mom friends, and my childhood friends. All of them are so important in reminding me who I am and what I need when I forget. I cannot imagine the depth of struggle you are going through, but I do know that your post is applicable to everyone, not just those who have CVID, and that is a gift you have given to us–the awareness of the wonderful people we have, and need, in our lives. Thank you for sharing.

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  2. I was diagnosed with CVID after a lifetime of bronchitis, sinus infections, and earaches that would not resolve. Finally a physican’s assistant recommended an IGG panel. Low and behold, I had CVID. I was 59 years old at the time and in a very demanding job. No one really cared what was wrong and that I was having to adjust to IGG therapy. I would go for a five hour treatment and all my work would be waiting for me when I came back home. I finally was able to transition to subcu IGG. I reacted to the first IGG and finally was able to go on Cuvitru, which works. Still,I have to stay away from anyone sick. I have no protection at all against viruses. I have experienced the situations and mental issues you have experienced. I am lucky to have found this blog. It makes me feel I am not alone in this. Thank you!

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