What They Don’t Tell You About Chronic Illness

    I’m in the process of being diagnosed with narcolepsy 1. I’ve always felt that there was something more going on with my health. Sometimes, I would wonder if other people were as tired as I was, and if so, how they survived the daily grind. They made it look so easy! Maybe I was just weak.

   Turns out that wasn’t true. I’ve always had this, I just never knew the symptoms were abnormal. Being dog tired every day, finding it hard to get out of bed in the morning, hearing and seeing things that weren’t real when waking up or falling asleep - these were all completely normal to me.

    In 2010, things got worse. I napped every day after school, absolutely exhausted. The rest stayed the same. Sometimes, I could push through and not need a nap, but that was rare.

    In 2022, things got way worse. I was pushing my body to the absolute limits because I had poor boundaries with my job. Working more than full time and doing a part time internship was the pits. (There’s a post coming about that, so stay tuned). Suddenly, I had to nap every day and the naps were no longer a choice. They had to happen or I couldn’t function.

    Fast forward to now. I have textbook signs of narcolepsy 1 but cannot be diagnosed yet. The overnight and MSLT sleep tests did not show narcolepsy. Because of my anxiety and not being able to take my medications for a month, the doctor thinks that affected my results. I will have to do another in the near future and hope that my results are better.

   Lately, it feels like things are on extra hard bonus mode. Like every time you finish the game on the hardest setting, a new, more difficult option appears. But it’s not optional. You have to do that level in order to keep playing the game.

    Here’s a list of things that surprised me:

      Things No One Tells You

1. You will be more tired than you can ever imagine you could be.

    Your actual muscles ache with exhaustion, all the way down to your bones. It’s like that feeling when you get sick. How you feel that “sick” deep in your muscles, joints, and bones. Hollow.

    Your brain feels like it’s enveloped in a fog. It makes it so hard to think. Sometimes, you say things that either don’t make sense or make you look like you don’t know what you’re talking about. It just won’t come out right. You forget simple things like where you put your keys, or forget to bring your purse to work with you.

   People with narcolepsy are already functioning at a level where it is like they have been awake for three days straight, so this makes it much worse.

2. You will have no energy or motivation for pretty much anything.

    You no longer have the energy to call your friends or family or schedule time to spend with them. You fail to call and ask about really important events in your friends’ and family’s lives, which makes you feel like a jerk.

   You only have so much energy in a day and have to plan what you’re going to do with it. Sometimes, it looks like “Do I use this bit of energy to shower or wash the dishes?” Sometimes, things get put on the back burner until tomorrow. Sometimes, the dishes have to wait.

3. You will be sick. A lot.

   If you push yourself too hard during the week, surprise! You will be useless on your days off. I have been getting sick a lot recently for seemingly no reason. It always seems to be on the weekend after I’ve pushed myself to do more than what I can do.

   It feels like a cold coming on, where that exhaustion in your bones is so intense that you can barely do anything but exist.

4. You will find out that there’s probably a lot of other things wrong, in addition to what you already know.

   People with chronic illness typically have multiple other chronic illnesses. There are some studies on that topic that you can find if you Google it. It makes sense to me though. If you have one thing affecting your body, it’s likely to affect other parts of your body too.

   My hips and joints bother me sometimes but it’s been more often. I think there’s something wrong there. Just something else that needs to be checked out.

5. You will find out just how much other people care about you.

   I am a very independent person. Well… I was a very independent person. There are just so many things I can’t keep up with now. For example, Mr. Plant-Powered Therapist keeps our house immaculate and keeps food in the fridge. I could not thrive without him. I do my best to help, but it’s clearly less than I could do before.

   I think there’s a big difference between people who knew you before versus people who only knew you after. People who knew you before can see a clear difference in you and your abilities. They know that what you’re saying is true. Other people have to take your word for it, and they’re not always understanding.

   Surround yourself with people who care about you and treat you well. Don’t let someone talk down to you for something you can’t control.

6. You’re going to need to do way more self-care than you do now.

   I guess this is a given but it was surprising to me. To keep yourself happy and healthy, you’re going to need to attend to your needs more. Paint your nails, take a walk, play with a pet, plant a seed. Anything that improves your mood and happiness.

7. You will grieve.

   Grieving a chronic illness is something people don’t talk about often. Not only are you grieving because you are now chronically ill, you are also grieving a life that could have been. It is VERY important that you talk about this with someone if it gets too overwhelming. We all need support sometimes. If you're looking for a therapist, check out my post outlining five ways to identify a good therapist.

 

If you're interested in reading more about chronic illness, check out my post about living with chronic illness. 

 

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