When you learn that you have a chronic illness, navigating life can be challenging. There’s POSSIBLY things you can do to help your condition and they may or may not help. You may improve, your symptoms may get worse. There’s no real way to know, most of the time. Here are the things I personally struggle with.
1. How much to tell people. Do I let people know the full extent of how unhealthy I am? Will they think I’m seeking attention? What if they pity me? I certainly am not out to seek attention and I DEFINITELY don’t want pity. So where do I draw the line between educating and also releasing some of this burden I bear and not bothering people? This is where I find online support groups super helpful. They’re teeming with people who get the struggle!
2. How long it’s acceptable to grieve. I personally go through the stages of grief regularly. This includes occasional acceptance. It’s difficult to NOT grieve your old, able bodied life. Many of us had jobs we had to quit or give up hours at. Many other chronically ill people I’ve talked to used to be quite active. A lot of us feel like we let others down. Not to mention, we are faced with new symptoms randomly appearing or flare ups that even further reduce our abilities. I have a really rough time accepting my new found limitations. What helps me cope is understanding my worth through other means, such as my writing.
3. When to push my body or rest. If I push my body harder than usual, I will inevitably pay for it. But some occasions require me to push beyond my limits. It’s a challenge to know when to make the exception. I make exceptions for big events, like weddings. Or if someone really needs my help. I just do my best to rest in the days that follow.
4. When to see a doctor for new symptoms or just move on. I frequent my doctor’s office, unfortunately. While my doctor is amazing, I’m sure neither of us want me there as often as I am. To this day, I’m unsure when to discuss a new symptom. You’d think you would always discuss a new symptom. However, when you’re regularly sick, they appear frequently. It’s simply not feasible to call the doctor every single time something new appears.
5. Weighing the benefits and risks of a new medication. Some life saving medications have awful side effects. Some improve our functionality but have other adverse affects. Weight gain or loss are common side effects we face. If you’re wildly underweight, it could be dangerous to take a med, even if it helps, that causes you to drop pounds.
What do you find confusing about being chronically ill?
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