One of the biggest problems faces by people with chronic illness is judgement. Hopefully no one is judging you for actually having an illness you can’t control, that is downright stupid. But we do face other kinds of judgements.
Firstly, you get the “why are you always sick?” or the “we didn’t ask you because we assumed you weren’t feeling well” people. Close friends can be guilty of this as well, and honestly on some level I don’t blame them at all. When you aren’t going through something yourself it can be incredibly difficult to understand it; putting yourself in another person’s shoes is no easy task (I applaud actors who can do this for different roles).
Having somebody assume you are always sick because you have reoccurring flare-ups from a chronic illness is a judgement. And it can make you feel like crap about yourself. You really start to ask yourself questions like “why do I bother trying?”. The important thing to remember here is that no matter how terrible you feel: push yourself.
This can seem like an incredibly impossible task. I know, I’ve been there! During most of my university career I weighed what was important (graduation) and ended up giving into a lot of pain and ill feelings when it came to class attendance. Yes, I had the medical documentation to back it up, and a LOT of supportive professors and friends, but to be honest in some ways I gave into the devil on my shoulder.
I made the choice not to go to class a lot, instead I focused on my assignments at home, did readings at home, and often only went to classes when I felt unusually good or they were necessary. For example, I was an instructional assistant during my fourth year and for the most part I didn’t miss anything from those classes, once I was pretty sick and I still went to the class to see how my students were doing on something even though I had someone else filling in for the actual teaching.
There were pros and cons to my decision to not attend class often. On the one hand, not going gave me more energy to focus on my assignments, and I could teach myself a lot of the material from home. I still got good grades and I completed my degree, so overall it wasn’t a terrible decision. On the other hand, I probably annoyed the hell out of my professors, and I definitely missed out on a lot of social stuff with friends who were in the same classes as me. It isolated me from them in a way and I regret that part a bit.
It wasn’t until the end of my fourth year that something snapped in me. For some reason I had had enough of allowing this disease to control my life. I was hospitalized for about a month in 2018 very close to exam season, and even though I had IV’s and all the fun stuff that comes with being in the hospital, I did my homework. I finished my assignments, I kept up on readings and class material from my hospital bed, I finished the year with good grades even when professors offered to let me drop the class penalty free. But screw that I wanted to graduate on-time. So, I pushed myself. I think that might have been the beginning of my turning point.
I proved to myself that this disease can’t stop me. From there the feeling just escalated and eventually about a month before university actually ended for me, I straight up decided to control the disease, not the other way around. Since then I’ve increased my level of exercise, changed my diet, pushed myself to get out of bed even when I feel completely awful, and I decided to stop hiding. I’ve taken to social media in order to spread awareness for endometriosis and hopefully help those struggling with it and other chronic illnesses. Obviously not everything is post-able, and I don’t want everything about my life and ALL of my raw feelings exposed, but I am being honest about the struggle and posting some images that make me feel vulnerable.
Secondly, just because I push myself and have this mindset doesn’t mean I don’t need breaks. I’m still going to need to rest, there are still going to be days where the pain, nausea, dizziness, fatigue, and straight up hell are going to be too much and I need a rest. But this is NOT the same as giving up and it is NOT the same as a lack of motivation or laziness.
In a lot of cases, people see what they want to see. I imagine a lot of Hollywood actors, well known YouTubers, and famous artists (musical or otherwise) have this exact issue. The one main flaw of social media (and paparazzi, fans taking pictures of you, etc.) is that there is a high demand for insight into your life. And I TOTALLY get that because there are people I’m a fan of who I follow and want to know what’s going on in their life, and that includes the pages I follow about other people with chronic illnesses. I especially want to know what’s going on in the lives of people like me, with endometriosis. But sometimes people aren’t sure where to draw the line, you don’t NEED to see and know everything, and you are never going to, but many people act and make comments about things based on what they DO see and therein lies the problem.
When you don’t see or know everything, you’re missing a piece of the puzzle. You can’t make accurate judgments about things or people when you have missing information, so calling somebody with a chronic illness lazy or unmotivated is absolute bullshit. You might not even know that they are ill because that’s something they’ve chosen to keep private. Either way, if you see that someone is resting a lot, doesn’t feel well a lot, or isn’t doing something the same way as you, it is NOT up to you to pass judgment. Especially when you voice that judgement. I’m totally guilty of passing judgement on people, I’m definitely not a saint, but more often than not I catch myself in the thought and think “no, I can’t say/think that because I have no idea what’s going on for real”. Our brains are super confusing.
The point is, you can’t look at someone’s life or behavior and automatically know what’s going on. In the case of people with chronic illnesses, it might look like laziness or a lack of motivation from the outside, but the reality is that the person you are judging is trying their absolute best to cope with a situation they never wanted to be in.
To an outsider, I looked a lot like a lazy student who skipped class a lot and never got out of bed. In reality, I was always doing work from home. Yes, I did it while sitting in my bed, but so what? I also wear a lot of sweatpants because they are the one of the best things in the world, right up there with pizza.
If that’s how I’m most comfortable working then that’s the way it is. It’s a lot easier to sit in bed with a heating pad or hot water bottle on your abdomen than it is to sit upright in a chair at a desk. I have done this. Do not recommend. I still do a lot of work from my bed instead of my desk, I’m sitting in my bed right now writing this blog. Why? None of your business.
Bottom line, don’t mistake an illness for laziness or a lack of motivation. Because I can assure you, that is likely NOT what’s happening.
I started a GoFundMe in order to help advocate for and raise money for endometriosis research. If you want to help, please learn and spread awareness about this disease, and donate if you can. No amount is too small. If you’re interested, please click here.
You can also follow me on Instagram and Twitter where I post whatever I want to, and try my best to advocate for endometriosis.
The Blog of Erika 