A Chronic Illness Diagnosis

I mentioned this a few times, but I've been sick for about a year and a half. It hasn't all been one single issue, but more like a series of unfortunate events and conditions (like the emergency appendectomy). I've seen more doctors, had more tests and been under anesthesia more in the past 18 months than in the rest of my life combined. However, there is finally light at the end of the tunnel. 

I'm finally ready to talk about it here, because I have a diagnosis. Actually 5-6, because of course I can't just have one thing wrong with me, but multiple things that required a really exceptional gastroenterologist-diagnostician to figure out. And it took a long time to get to him. I've spent the past year being misdiagnosed, going from specialist to specialist, running a repeat of the same tests (but through the lens of their specialty), doctors only addressing symptoms and prescribing me drugs at best. At worst they were giving advice that actually aggravated my condition, making assumptions and judgements due to my weight or being a woman. A true low point for me was when one doctor told me that the medicine wasn't working because, "sometimes anxiety, particularly in females, can reach a level of hysteria that overrides the medication." Not that I might be misdiagnosed. He blamed Female Hysteria. Like it's the Victorian Era. Did I mention I am lucky enough to live in an area where we have some of the best doctors in the country and top hospitals? What do people in other parts of the country with only one hospital DO?

Living with a chronic illness is no joke. I decided to share it because it's been such a big part of my life and will continue to be, but mostly I tried to keep it quiet for a long time. Partly because I was struggling, partly because I kept getting misdiagnosed, partly because I didn't want the attention. There are a lot of stigmas. People's reactions are awkward. But for anyone else out there who's suffering, maybe me talking about some of my stuff will make you feel less alone. Chronic illness is isolating, it's a struggle. And it can be cyclical, so you never know when it's going to flare up. Making plans, going out, doing anything can feel daunting.

I am now on the road to recovery, though I will have to take medication for the rest of my life and deal with some massive life changes to manage my conditions. And not everything can be fixed with pills. One of my conditions is something called gastroparesis. Basically my stomach doesn't contract to digest and move food through properly, which makes me feel very sick when I eat. And my stomach doesn't expand. I get sick really easily, I was nauseous all the time. The only way to manage it is through a strict diet. No fat, no fiber, no tough meats, no seeds, nothing that expands in the stomach. So no fruits and vegetables except overcooked carrots and zucchini. No nightshades (tomatoes, peppers, white potatoes). Nothing with fat like chocolate or avocado or nuts. No bread or baked goods. Think lots of bone broth, collagen powder, a few crackers, a single meal a day of chicken soup with overcooked carrots and a little plain pasta. I have really bad GERD from this condition too, but now that it's healing I can use my new juicer to get some vitamins from a selection of fruits and vegetables without the fiber. 

The thing about gastroparesis is that there is no cure and there are a million causes for it. Sometimes they can figure it out the cause, sometimes they can't. Sometimes it's permanent, sometimes it gets better with the treatment of the underlying cause. My condition is considered mild to medium (I don't need a feeding tube, I can keep down liquids and gastroparesis-friendly solid food), which means there is hope it might just get better on its own long term (like in a year). But also, maybe not. And we don't know what caused it - it could be from one of the other conditions I have, it could be diagnosis number six waiting in the wings. And there's no long term treatment for gastroparesis, the drugs that can be used to temporarily relieve it have some very scary side effects long term and don't do a darn thing to fix it. To me it's not worth it. 

I was just settling into my gastroparesis diagnosis when I got another curveball added in - I have celiac disease. This was a shock because I was tested for it over and over, and it never showed up in my bloodwork - just in a genetic test and a biopsy. The crackers and plain pasta that made my stomach happier were making the rest of me really sick. This is a hard change for me because my diet is already so limited. I'm struggling with this one. Yes there are LOTS of gluten free options out there in this day and age... but a lot of them contain fat and fiber to make them palatable and I have to be so careful. Mostly it's the rice stuff that I can have... and it takes some getting use to. 

And before anyone gets weird about "but white rice isn't healthy!"... this is from a nutritionist, humans need carbs in our diet to live. My best options are juice and rice because fiber is actually dangerous for gastroparesis patients. Imagine waking up one day and suddenly everything healthy you normally eat  made you sick. And no doctors believed you, while you got worse and worse. It was HARD. Looking back, the worst part was not knowing. Not knowing why, not knowing what it was, being afraid that eventually I wouldn't be able to eat anything at all. 

I also want to acknowledge that I KNOW everyone has had a tough 18 months thanks to the pandemic. This isn't meant to be a pity party for one. What I'm going through isn't exceptional and I think the pandemic struggle has been universal for a variety of our own reasons. And for all those hardships, there was a silver lining for me because I could hide my illness for a long time thanks to the quarantine restrictions. No one could get together much anyways. Stick to your bubble. Only a few people outside my family needed to know. I was able to hide it for the most part. And at the limited things we attended I could pretend I was eating or stick to water in a red solo cup because everything was outside anyways. Sports were limited or virtual. As soon as the cold weather hit, I was able to wrap myself up in my giant coat and no one could see the weight loss. Hibernating in the winter is kind of my default setting anyways. 

And then it was spring and suddenly everyone's vaccinated and making plans and outdoor sports to attend no matter what I felt like. It was scary... but the only way past it is through. I put my big girl pants on, stuffed a sleeve of anti-nausea meds in my purse and sucked it up. Sometimes I was fine. Sometimes I was miserable. I learned to wait to eat solid food until after we're back home. Never before. I figured out a game plan, and it's working. I bring bone broth to places and gatherings in a travel mug as my meal. If they don't know about it yet, I confess my illness. I'm used to watching other people eat now. I've had to cook for my family for months and not touch a bite of it. I've dealt with the uncomfortable compliments. Awkward comments. Embarrassing questions. I am a pro at it now. 

Honestly the hardest part for me was not having answers to questions, having to say "I'm sick but we don't know what it is," because it has left me feeling very vulnerable. Because I've been to so many doctors and had so many tests and so many misdiagnosis issues (including some big scares). And while some well-meaning people love to play detective doctor with google and webmd to help... sometimes it got embarrassing. And weird. And honestly I was getting enough bad advice from doctors, let alone from random people with no medical knowledge. But it's okay because now I have the answers, the correct answers. I'm armed with knowledge now. 

The gastroparesis diagnosis came first out of everything by almost two months. As scary as it is, it's also been a shield to protect myself. I'm not being picky, I'm not being difficult. I don't have an eating disorder. It's not in my head. I have gastroparesis, an actual disability. I'm not being lazy, I'm having a flare up. It's okay to rest, it's okay not to eat that, it's okay, it's okay, it's okay. My first real diagnosis allowed me to stop feeling guilty about ignoring bad advice from doctors that was making me worse. I can wear the condition as armor around people with uncomfortable questions, with nonsense suggestions. After months and months of not knowing what is wrong with me... knowledge is power, knowledge is strength and just knowing is everything I need to keep going. 

Mentally and physically I feel better than I have for a long time. I have to take medications 6x a day which is kind of a pain, but I'll get used to it since I'll be doing that forever. Things are going to take time to heal (like the celiac disease... it will take months to fully detox from the wheat gluten), but I feel better than I have in over a year and that's HUGE. Onwards and upwards. 

And finally... for anyone else dealing with chronic illness or autoimmune stuff that doctors can't figure out... keep fighting for yourself, searching and don't give up. Doctors are human with their own biases, overloaded with cases and often just want to treat the symptoms. I was about ready to give up on getting a diagnosis when I finally got into see the doctor who figured it all out for me. He was my sixth doctor and the first one who wanted to figure out the root cause and not treat my symptoms. So get a second opinion, a third, a sixth. There's hope. Even if the answer isn't what you wanted... knowing sometimes can make all the difference.