Having a chronic illness is unpredictable. The best way to describe it would be feeling as if you were on a never ending rollercoaster. You can go from feeling in control of your symptoms to feeling as if everything is falling apart in a blink of an eye. Unfortunately it is incredibly easy to experience a setback and feeling like everything is spinning out of control.
“I think the most devastating part of having a chronic illness is that you can do everything right and it’s still not enough”
Life with chronic illness means learning to expect disappointment but trying your best to avoid it anyway. Resilience is the most important aspect of learning to live with a chronic illness. You have to be able to fight like hell and do everything you can to feel your best, but constantly be on guard for any minor trigger or random flare that can undo all the progress you have made. Its either fight or let it consume you, and at least for me letting it consume me is much scarier than feeling like I’m fighting for nothing. It's exhausting, it’s devastating and it’s really the only option in order to live your life. Having a chronic illness has made me have to fight with myself for myself. I have learned how to advocate for myself. I have learned that I matter and deserve to be given the care that I need.
I am at the point in my chronic illness journey that I am able to go for a pretty long period of time maintaining the balance necessary to feel good. It’s amazing because I am able to do more things that I want to and still feel good. However I think now it's almost harder to fight for myself and my health. I have more to lose than I used to. So when I have a flare or am having a particularly difficult day it can feel like things start to slip away. I graduated College, I have a job I love, and I have been able to establish a life for myself. I get scared when I’m having even a minor symptomatic day because I have to wonder, will this cause me to fall off the narrow tightrope it feels like I am constantly walking on? Will this flare of symptoms be what causes me to have to hit the reset button?
I have had to hit the reset button more times than I can count and I wish I could say it gets easier but it doesn't. There is added pressure due to the fact that I am young and my illnesses are for the most part invisible. I constantly feel like there is more pressure for me to prove that I am not a burden to society or that I am not "crying wolf". It is the recurring narrative that people with chronic illness experience from doctors, strangers and loved ones. I am not asking for sympathy, I am just trying to paint a picture of the reality. I will never show someone how bad I feel or how much pain I am in unless they are someone I trust explicitly because of how many times it has been weaponized against me.
I get that it can be hard to understand. Most of the time people ignorantly think, "well if you are really that sick, then how come you were able to travel or you went out last weekend". Like I said chronic illness is like a roller coaster sometimes you feel good and sometimes you feel terrible. I don't let that kind of thinking get to me like I used to. I have come to cherish every good day that I have and choose to do things that I want to because I don't know if I will ever feel as good again as I do on any given day.