My Experience

5 Things I Wish People Understood About Chronic Illness

I was reminded this week that the general population has no idea what it is like to live in a state of chronic illness. There were two occasions where I left a conversation furious. It was so clear that they had no boundaries when it came to asking questions or approaching the topic. So without further ado, here are five things I wish people understood about having a chronic illness:

  • You Don’t Have a Right to My Information

This is something I address relatively often. For some reason, people feel entitled to know what is going on in my body. I don’t owe anybody information on my personal health. It’s absolutely none of anybody’s business to know what’s “wrong” with me.

  • It’s Not A Compliment to Say I Don’t look Sick

In that same vein, it’s not a compliment to say I don’t look sick. Looks can be very deceiving. You can’t see a heart condition, seizure disorder, hearing loss, blindness, or autism. The list goes on and on. Why people feel inclined to make snap judgments based on looks, I just don’t understand. Yes, I am too young. I look too healthy. I appear calm, collected, and all around normal. None of that takes away from the fact that I am still in fact sick. Telling me what a shame it is that I’m sick and disabled at 22 doesn’t improve my reality. It is certainly not a compliment.

  • Chronic Illness Grief is Intense

I’ve talked about chronic illness grief a lot. It’s something that I feel very intensely at times. Having a chronic illness often means that you know what it is like to be healthy and become disabled. That is extremely difficult to process. You are aware of all the things you used to be able to do that you now can’t. You are aware of what it is like to be treated as disabled and non disabled because there is a drastic difference. I am very aware of mortality and that is something that requires daily processing. That’s not an easy thing to be confronted with.

  • Having a Chronic Illness is a Full Time Job

Having a chronic illness takes up such a large amount of time. Weekly, I go to three sessions of cardiac rehab, 3x 1.5=7.5. I get a weekly infusion, that’s two hours =9.5. I spend an hour setting out my medications each week and charging my neurostimulator =10.5. Daily, I have to remember to take vitamins and medications, walk Crush and train him, I take naps to keep me functioning from the intense fatigue. Let’s just say weekly that takes 5 hours= 15.5 That’s just a start because that doesn’t include any doctor’s appointments. This week alone I have three. Then add in ER visits, hospitalizations, surgeries, and it starts to feel like your entire world revolves around your health. Frankly, my whole world does revolve around my health.

  • I Never Get A Break

Not only is having a chronic illness a full time job but I never get a break. Just because it’s the weekend doesn’t mean I get to disconnect from having health issues. Sometimes it feels like one thing after the other. I have to do this while balancing everything else in my life. That means jobs, relationships, and taking care of my normal needs get pushed to the back burner sometimes because my health has to come first. There’s no separating the two. It’s a constant process of adjusting and readjusting. It’s exhausting.

I’m not saying this to complain. I think some people genuinely don’t understand and why would you? This is why it’s so upsetting when someone says, “oh so you just have dizzy spells” or “It doesn’t look like there’s anything wrong with you.” In fact, it’s so much more. To say it’s just xyz is the understatement of the century. This is my entire life. Some days that is more difficult to deal with than others. I am used to this cycle, I have found happiness in acceptance but that doesn’t make it easy. That’s my point. Even though I seem like I have it all together all the time doesn’t mean that that doesn’t take all the energy I have.

I hope that you’re having a great day. I hope your day is filled with joy, positivity, and laughter. I hope you find peace, love, and happiness.

One Comment

  • Maartje

    This is so familiar!
    Especially the full time job thing. When I was at my worst and couldn’t leave the house at all or work or something people kept asking “but what do you do all day?”. I didn’t even have time to do something fun, like drawing or watching something, but there was no way people would understand, apparently.

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