I know. This sounds like one of those posts that tells people that their chronic illness is “all in their head”, or can be pushed through, or other nonsense. I promise, though, it’s not.
This post is about my chronic illness, the illness that has many symptoms but no true diagnosis yet (hopefully soon). It’s about the lack of understanding about chronic illness in general, about the guilt that people who have chronic illness feel, and about the push to power through – despite the Spoon Theory; despite your ability to do so or not. This is about that side of chronic illness. And it’s about fostering more understanding, because if anyone needs to be given advice, it’s those people who insist that chronic illness is another way to be lazy or get out of doing things.
I have Gastroesophageal Reflux Disease, or GERD. Part of having GERD is having something called chronic gastritis, which is an almost-constant inflammation of the stomach lining, and can lead to ulcers (it has, for me). You know what else a constantly-inflamed stomach lining does to you? It makes you feel sick and in pain. All the time. If my medication decides not to work due to something I ate, or not enough sleep, or that time of the month, or simply a change in the weather, then I spend all day with the feeling that my stomach is going to explode. I have constant acid reflux. I have nausea, sometimes severe nausea. And I feel exhausted and in pain. Having gastritis means that your stomach feels like there’s a small animal inside, gnawing at you, trying to chew its way through your guts. In short, it’s awful. And there’s nothing I can do about it right now.
One day of gastritis is miserable, but I can get by. But an attack generally lasts anywhere from a day to four days – and after four days, I pretty much want to give up on life. Gastritis makes eating hard, but if you don’t eat, it gets worse. It blocks vitamins and nutrients from being properly absorbed, so I get weak, and sometimes anemic, no matter if I take iron or not. I have no energy. I can’t sleep. And did I mention the pain? It’s not fun, and while people in my life know I have it, it’s not something I want to really constantly advertise to people. During an attack, though, I have no choice. Though I do my best to power through it, sometimes, it defeats me, and I end up miserable, fractious, and sick for longer, because a gastritis attack that lasts awhile often leads into a secondary infection like a cold, due to my weakened state.
Look, it’s easier to go through life when people don’t think you need special treatment. And I wish I was a person that just never got sick. Gastritis isn’t my only chronic illness, but it is the one that tends to trouble me most. And it sucks when people think you bring it on yourself. I’ve had many people tell me to just change my diet and it’ll go away. Well, I’ve changed my diet many times, and it doesn’t “just go away”. I’ve changed medications many times, and it keeps coming back. My doctors and I are working on finding out the reasons why I have such a crappy stomach, but regardless of why, it doesn’t help when people refuse to understand, or think I’m lazy or trying to get sympathy. Trust me, false sympathy is the last thing I want or need when my stomach is killing me. Really, I’m just trying not to throw up on you. Anything else is just something else I have to smile through so that you don’t think that I’m lazy and negligent with my health.
Gastritis ruins fun occasions. It’s often brought on by anxiety – and as a proud owner of a raging case of Generalized Anxiety Disorder, I’ve got that in spades – so I spend a lot of time trying to talk myself out of bringing an attack on by luridly envisioning the symptoms or worrying about whether or not I’ll feel sick through Christmas dinner and be unable to enjoy it. I get gastritis before job interviews, before confrontations, and sometimes after a nightmare. I have an entire arsenal of medication in my purse at all times. If it’s for the stomach, I’ve got it. Anti-diarrheals, anti-nauseants, antacids and prescription gastritis meds, ginger tablets, and Rescue Remedy. I’ve got it all, and sometimes none of it works. I live in fear of none of it working . . . and my anxiety often makes none of it work. So, there’s that, which is a lot of fun.
Gastritis makes work hard. I have to pretend nothing is wrong, and that makes me more tired, more miserable, more sick-feeling. I’ve gone through entire days at work simply drinking tons of fennel and ginger tea, hoping I can make it home without anyone realizing that today is an off day for my health. I’ve been too ill to go to work, lying guiltily in bed, wondering if people think I’m lying, or they think I’m just trying to get a day off. I’ve spent lunch hours unable to eat, pacing around the back area, trying to curb everything and get myself under control.
Gastritis makes relaxation hard. Because I never forget the pain, whether it’s lying in bed with the cats on a Saturday morning or getting ready to go out to a movie with friends. I never forget to make sure that my purse pharmacy is stocked. I have left fun activities early because my stomach hurts. I’ve been that person, the person who ruins the whole party by needing to leave early due to my stupid, annoying, constantly-bothersome gastritis.
I have spoons the way everyone else has spoons – I’ll wake up in the morning with a full drawer of them and then at the end of the day, have absolutely none. And my illness isn’t the same as other chronic illnesses. I can work (and I do – a lot!). I can socialize, and I can go about my everyday life most days. But that’s just it – because my illness is invisible, and because I do have the strength, right now, to be able to power through most days, people tend to think that it’s a simple stomach ache. Take Pepto-Bismol. Don’t eat spicy food. Don’t complain, because no one actually cares that gastritis can be a serious thing that can lead to serious illness requiring surgery, or even cancer.
And I get tired of grinning and bearing it. I get tired of having to explain away this attack to myself, or changing one more thing in my life to get it to stop, or hearing my dentist tell me that my teeth are losing enamel due to acid reflux. I fantasize about getting a stomach transplant, or at the very least, a fundoplication surgery to stop the pain, the ulcers, the nausea. I fantasize about feeling better. And those are weird, sad fantasies to have.
Chronic illness sucks. Dealing with it day in and day out sucks. And what I wish is that more people realized just how exhausting it is to live with an illness like this. I’m not looking for pity; I’m not trying to be a victim, and I don’t need pity. I just wish for a little empathy sometimes, because living with a chronic illness is extremely isolating.
So. I’ll go about my life, and I’ll continue to push through, because that’s what I do, and that’s what’s expected. But I wish we didn’t have to push through just to fit in. I wish sometimes that the world would slow down a little bit and recognize that it’s not just a stomach ache.
It’s gastritis and it pretty much rules my life. And sometimes, I forget the spoons altogether, because it doesn’t matter. I still have to power through, anyway.