After a really tough couple of months, and a very tough week last week, I want to open up and be honest about what is possibly my biggest secret.
People will know me as a happy, optimistic (and hilariously funny) person. People regularly tell me they “couldn’t do what I do,” in terms of taking my rare diagnoses and difficult treatments in stride and pushing myself to still do what I can with a smile on my face.
They see me at work, they see me at the gym, they see me out at drinks, they see me socializing, laughing and joking. They see me work hard, and they see me taking time to myself when I need to.
What these people don’t see is me calling people crying and panicking when I do my treatment wrong. They don’t see me having panic attacks in supermarkets. They don’t see me lying in bed as long as physically possible because life seems too difficult to face.
They don’t see the clouds in my head when I’m dealing with life changes so significant, I can hardly function. They don’t see what state my house gets in when I’m too sick to clean up after myself. They probably don’t even know I needed to see a counselor to deal with my diagnosis and treatment last year to have that signature smile that everyone comments on.
So instead of saying I’m fine all the time, I’m opening up. I’m not a hateful person at all. I don’t hate much ever, but I hate my immune deficiency and I hate my lung condition. I’m allowed to – they’re shit. So I’m going to list everything I hate about them. Here we go:
- I hate my treatment. I hate needles (ask the nurses who used to put my IV in every month) and now I have to put a needle or two in my stomach weekly. I hate how it’s slow and sore to push in the plasma.
- I hate the bulge that the viscous plasma leaves on my stomach after my treatment. The bump looks creepy — it hurts, and it takes a day to go away. Weekly.
- I hate that I use cute filters to hide how much I truly hate injecting myself. I hate that I secretly wear a Wonder Woman t-shirt and underwear as a private energy source because I don’t think I can do it alone.
- I hate the fear I have of getting sick and the mild anxiety it leaves me with, especially when I’m run down.
- I hate that this can affect my work. I hate having to work from home when I feel like I’m getting sick – it reminds me that I’m different.
- I hate my cough. I hate that I have to explain it to most people I meet because most people comment on it. I hate that it always comes at inopportune moments. I hate that it’s so constant, it starts to define me.
- I hate that I’m getting more symptoms that I’ve never had before.
- I hate being incapacitated by sickness. I hate feeling scared by sickness.
- I hate that I can’t 100 percent commit to almost anything in advance, especially physical activities. I hate that getting sick before a getaway is a common occurrence.
- I hate that I feel like a burden. I hate that I don’t want to tell people the full story for fear of them thinking I’m too broken and underestimating me. I hate that I spread my burden around so no single person knows what I’m really dealing with.
- I hate asking for help. I hate that I feel like I should be able to take care of myself when I sometimes can’t. I hate getting depressed and struggling to act as if everything is fine.
- I hate that dating me comes with a disclaimer that it won’t be easy. I hate that my illness can easily end a relationship.
- I hate being self-pitying. I hate that I feel guilty that I hate my common variable immune deficiency (CVID) and bronchiectasis when I know so many people have it so much worse than I do. I hate that I’m afraid we’ll share the same fate.
- But mostly I hate the way I don’t hate my illnesses, not even close, not even a little bit, not even at all. Just kidding. I totally do.
Yes, I’m a happy, optimistic, hilariously funny person with an invisible illness. Even when I’m sick and weak, even when I’m struggling to be social or at work. I hate what comes along with my illness so much, but I’m a tough cookie, and even stronger now.
What frustrates you about your illness?
Follow this journey on The Letter C
Charlie is a 28-year-old Kiwi girl living with common variable immunodeficiency (CVID) and bronchiectasis. She works in digital and loves to work hard, play hard, exercise hard and rest hard. She’s also a big believer in the power of vulnerability and openness, which is why she likes to write and talk about these things when she can.
charlie-scott