Frustrated: Living With A Chronic Illness
Having a chronic illness can be well, you guessed it – frustrating.
For me, the most frustrating part of having sickle cell anemia is never knowing when you’re going to get sick. I know that’s kind of the case with all illnesses, but it’s still different.
So much worse than the common cold
When you get a cold or the flu, you can almost predict it. There are the warning signs like a runny nose, cough, sneezing. Or maybe you’re like me and you get a sore throat every time the weather changes – that might also be related to sickle cell. The point is, when I get the cold, I know what to expect and can predict with confidence how I will feel over the next week or two.
Even when less common illnesses hit us unexpectedly, healthcare providers and scientists can still predict the course of most diseases. They even have medications that can limit the length of illness, improve disease prognosis, and sometimes cures! But with sickle cell there’s no predicting, no disease shortening medications, and not really a cure.
It's gotten better, but...
Don’t get me wrong, we’ve made a lot of progress with blood transfusions and hydroxyurea, and more medications coming out. And sure, I have certain triggers and signs that sometimes let me know when I’m getting sick. But once I’m sick, there’s nothing else I can do to get better quicker or predict when I’ll be back to normal.
Avoiding triggers isn't enough
I’ve even tried to stop myself from getting sick at all. I don’t know how I thought that would ever work. Maybe I could plan to drink extra water when it’s hot, wear extra layers when it’s cold, and avoid high altitudes when possible, but there are so many other factors outside of my control.
People don't believe you
I simply can’t plan around when I’ll have a pain crisis. It’s incredibly frustrating trying to explain to people how yesterday I was fine, but today I’m too sick to make it to work or school. People have a hard time understanding. I’ve been accused of pretending and attention-seeking. I used to get really upset that people would ever question my character like that.
If only people understood
If you know me then you know there’s nothing that personally hurts me more than not being a woman of my word. If I say I’m going to be somewhere and then I can’t, it honestly crushes my soul. I don’t like to let people down and people have expressed their own frustrations with me, which sometimes makes me more frustrated.
But, it’s not their fault just as much as it’s not mine. They don’t understand because they can’t relate. See, most people have had a cold or flu before so when you say you can’t come in because you’ve come down with something, everyone understands.
Sickle cell is frustrating
If you don’t have sickle cell, how could you believe someone could fall so drastically sick overnight. But trust, it happens often and not just to people with sickle cell. It still frustrates me having to work around how inflexible work and school can be. Sickle cell doesn’t wait for or plan around anyone. But it’s gotten better each year and I’m hopeful as we spread more awareness, soon I won’t have to explain as much.
Have you had a special caregiver in your life?