I’m on my 20th cold/flu of the year (not exaggerating). 2019 has been rough for me with viruses affecting my ulcerative colitis and the way that I feel and go about my day-to-day. Luckily, my Jpouch has been healthy (had a great scope in July). Unfortunately, what still pushes me over the edge with flares or having UC symptoms (pain, nausea, bleeding, cramping) are two main factors.
- Cold, flu, some other kind of infection, virus, etc.
Those 2 items work together in a vicious cycle with one another. Especially when it comes to working and my social life. On top of being sick non-stop this year, I moved, I changed jobs, and helped plan and market a massive tradeshow in Las Vegas that had astronomically impossible attendance goals. I’ve been criticized and crucified for not being able to keep up or for being sick. I’ve been told to ‘snap out of it,’ my diagnosis has been questioned. I’ve felt judgment and a lack of empathy. What’s really confusing for me and I’m sure others, is when peers tell you they totally understand. Then, when it comes down to the thick of it and you are actually sick, tables and opinions turn.
It’s hard. How do you know the best way to explain to people when you don’t feel well, but you might look okay? How do you explain to healthy people with fully functional immune systems that the flu for me could equal = 4-6 weeks of downtime? When for them it may mean 2-3 days.
This isn’t just a struggle that I’ve felt in the past year. It started when I began feeling symptoms of a parasitic infection and ulcerative colitis in 2012. I was withering away to nothing, a shell of my former self – yet still expected to work. And to work hard. I was a 22-year-old bartender who refused to give up when my body felt like it wasn’t mine anymore. At 30, I still suffer from feeling this. Inevitably I end up needing quite a few more ‘sick days’ than the average person per year. How do you explain that to an employer who is paying you to be at work?
Pushing myself when I have a cold or the flu can be dangerous – as I don’t have a colon, my immune system is non-existent, and I already live with flu-like symptoms quite often. I left my last job because I felt like there was a lack of understanding as to why I couldn’t do certain things or keep up with certain work activities. I was ridiculed for not being ‘normal,’ even though I worked my ass off.
I’ve always gotten work done, I always will.
I’ve always done the best I can – sick or not.
What I’ve come to realize, is that is going to happen everywhere I work. No one has time for pity or sob stories. Business is business. And if you aren’t hustling than what are you doing? This has led to a tough year with my depression and anxiety, too. Because I’ve consistently lived for the past year worrying about getting in trouble for not feeling well. Worrying that a job that I have is in jeopardy, therefore I have no health insurance, no money, no way to live. So, I push myself. Even on days when I feel like I can’t even gather the strength to take a shower. This morning was one of those days.
As I drove to work this morning, I sat and thought about how this all has transpired over the past 7 years. When I’m in a place where I don’t feel well, it puts my mind in a dark place, too. It reminds me that I’m not able to keep up with everyone else. It reminds me that I’m not anywhere near where I wanted to be by the time 30 came around. It reminds me that people will always judge, have commentary. Someone will probably always think I’m faking it, think I’m doing something to make this happen to myself, attention-seeking.
I’ve tried to steer away from identifying with my illness so much, but that’s tough when I have to think about managing my condition every single day. I have to think about the food I’m going to eat, how much sleep I’m going to get, is there going to be an accessible bathroom, if I’m sick and need to go home, who is going to judge me for it?
I slept the entire weekend. I lost my voice on Thursday. I sat and looked at myself in the mirror and cried when I was told that I wasn’t needed for a meeting on Thursday morning if I couldn’t talk. “Pointless” and “unnecessary” were both terms that were used. I have a tendency to take things a little too personally, especially when I’m not feeling well. But for some reason, those 2 words hit me hard. Those 2 words perfectly defined how I feel when I’m not feeling good. I am pointless. I am unnecessary. And not in a ‘woe is me’ kind of way. In a real kind of way. When you’re sick, you can’t do anything. You have nothing. When UC slows me down, what good am I to anyone?
So, the only option I have is to push through. To try and remember that I’ve been through and seen much worse. It’s tough, maybe even harder now that I have days when I feel so good that can take a turn for the worst so quickly – all it takes is a little virus. “I’ve been through worse,” has become my new mantra, replacing “I’ll be fine.”
After 7 years of dealing with UC, I’ve succumbed and started listening to my body more. If I’m tired, I sleep. If I don’t feel good, I take what I need to take and rest. If I’m bleeding or having pain, I’ll start doing hydrocortisone suppositories. I don’t know if it’s helped or hurt me. To be honest, I think it’s hurt me more than anything. It’s hurt a work reputation I’ve always tried to maintain. I want to be recognized as a hard worker. When I’m lying in bed sick, that to me is the equality of being lazy and not even trying. When I saw this infographic on Twitter this afternoon I stopped. I saved it to my desktop and thought to myself – I need to get these thoughts out there. I know there are so many people who have the same thoughts. The same gut-wrenching guilty feeling that happens – especially when your gut doesn’t need any more negativity.
All of the above has been said to me in some way, shape or form. Some people may not even have ill intentions. When you’re made to feel like a burden – you become one to yourself. It’s really sad. It’s a true struggle for me and probably will continue to be.
This infographic almost makes me cry because it’s so relatable. Hopefully, 2020 will bring better health my way. I’m definitely sick of being stuck in the cruel, “you don’t act/look sick” cycle.