7 Things I Didn't Know Would Happen When My Health Got Worse

In the beginning of my illness, I had more good days than bad days, and I never really thought that one day it would be the opposite. There were things that I didn’t know would happen once my health got worse.

1. I didn’t know I’d have to be my own health advocate. I’ve spent the past several years researching and testing supplements, medications, treatments, etc. It’s been as if my doctors are playing a guessing game. There are days when I want to call every doctor, specialist and pharmaceutical company and ask if I can have a refund for the past 10 years.

2. I didn’t know I would have to stop working. For those of you still working, I applaud you. I hope you’ve found a system that allows you to live your best life. I had to let go of work (and my income). Sadly, my illness ( and I’m sure most of your illnesses) has no reason or rhyme, and refuses to follow a schedule. The lack of sleep, severe pain and debilitating fatigue had finally anchored me to the floor, and I needed to put every effort into my health.

3. I didn’t know I’d be alone. Don’t get me wrong, I have a supportive husband and a handful of friends who listen to me vent and really try to be there for me, but I’m alone on this journey. Having a chronic illness is no picnic. The days of spontaneity become a thing of the past, and you feel as though you’ve been reduced to a less fun version of yourself. Some people won’t be able to handle this new version of you, but try not to let that defeat you. There are people who will stick around and remind you that you’re worth the effort.

4. I didn’t know I would be on an emotional roller coaster. One minute, I’m trying to stay positive and be grateful for what I am able to do, and the next minute I’m sobbing in the bathtub. It’s exhausting.

5. I didn’t know I’d have to repeat myself over and over… and over again. I don’t mind answering questions about my illnesses. I think there needs to be more awareness for chronic illnesses, but no matter how many times I explain it, someone will still ask, “Are you feeling better?” or make comments like, “Maybe you should try exercising more and drinking more water.” I try to laugh it off, but I feel as though I should send out a greeting card that says “I won’t be getting well soon… or ever.”

6. I didn’t know that every day would be a challenge. Challenges can be great. I see people having babies, people continuing their education, and people advancing their careers. Those challenges can be tough, but they’re also rewarding. They make you feel as if your life has a bigger purpose and that you’re making a difference. What I’m facing is a little different. For instance, will I be able to drive to my doctor’s appointment without nausea or vomiting? Will I have the energy to make myself lunch, and if so, will I even have an appetite? When I take a bath, will I be able to muster enough energy to shave my legs? Having these issues makes me question my purpose. For now, I’m assuming my purpose is to fight this illness and heal to the best of my ability. I mean, healing is hard work.

7. Mostly, I didn’t know that people would continue to surprise me with kindness and understanding. Sure, there are doctors, family members, and acquaintances that will make you feel bad about yourself for various reasons, but there are those few souls that remind you that your fight is worth fighting.

I’m sure that I will continue to be surprised by the many faces of illness. I’m just hoping that there’ll eventually be more good days than bad. I’m also hoping for the day when I have the energy to shave both legs, but hey, baby steps, right?