Getting a diagnosis is a very important step in your journey of chronic illness. Along with giving you a better understanding of what’s going on inside you, it can help with the process of getting accommodations and processing insurance claims. Although a diagnosis isn’t likely to be the end of your story, it’s certainly something you’ll want to pursue if you’re able.

Unfortunately, due to the vague, inconsistent symptoms many chronic illness patients experience (fatigue, pain, disorientation, and so on), as well as a serious lack of research in the relevant fields, many chronic illnesses are very difficult to diagnose. In fact, according to one 2014 report, “patients report it takes more than three-and-a-half years and nearly five doctors to receive a correct autoimmune disease diagnosis.”* Although not all chronic illnesses are autoimmune-related, the experience appears to be similar across other types of chronic illness as well, with many spoonies struggling to be taken seriously by their doctors, as well as having to fight to find doctors with the appropriate knowledge to run the right tests and point them in the right direction.

What this means is that you will need to take on the brunt of the work, and become an advocate for yourself and your health. Unlike a toothache or a cold, what you have is likely not something your doctor has seen (or read) much of before. So, you’ll find yourself taking the lead, asserting that your symptoms are at a level that merits concern, asking your doctor to run certain tests, requesting referrals to specialists, and so on.

Because many doctors and nurses (especially general practitioners) are likely not well-educated in the illness you’re experiencing, you’ll find yourself searching online—Googling your symptoms, talking to other spoonies, reading blogs, and so on. To a healthy person, this may appear obsessive (“stop trying to diagnose yourself!”), but in moderation it can be a huge help in the process of receiving a diagnosis. Eventually, you’ll become an expert in your own condition, and surprise your doctors with all the information you’ve soaked up!

One thing I can’t stress enough is keeping records of your symptoms, doctor visits, medications, treatments, and insurance claims. A lot of spoonies experience “brain fog” as a part of their symptoms, which it makes it even harder to keep track as they go from doctor to doctor. Be sure to protect yourself from this sort of experience, especially when insurance, disability status, medication regimens, etc. are at stake.

*http://www.aarda.org/news-briefing-for-autoimmune-disease-awareness-month-2014/

This post was excerpted from the informational zine Chronically Badass. 

About the Author:

Diane is a newly-diagnosed spoonie living in Portland, Oregon. She runs a blog Spoonie Living (spoonie-living.tumblr.com), and has also published a free, informational zine for spoonies called Chronically Badass (https://gumroad.com/l/chronically-badass). 

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Did you know that our culture basically revolves around food? It’s actually pretty insane. You don’t realize the full extent of this until eating or finding food to eat becomes problematic.

We have luckily become more aware of certain disorders that require dietary restrictions, such as celiac disease or diabetes, but a lot of chronic illnesses come with dietary restrictions that don’t have their own separate menu. And, even with the new awareness of the more “mainstream” dietary disorders, it can still be a challenge to find food in many restaurants.

I have gastroparesis, so my dietary restrictions are pretty insane. I can’t have (sped up) fatty foods, fibrous foods, food that cause bezoars, skins, seeds, nuts, anything with indigestible parts such as broccoli and cauliflower, hydrogenated oils, aspartame, fake fiber, caffeine, high fructose corn syrup or alcohol.

My friends call me The Waiter’s Terror.

So a couple of tips I’ve learned for eating with intense dietary restrictions.

Pack Your Own Food.

I always pack a few staples in my bag wherever I go, in case I can’t find food where I am. I like beef jerky sticks and baby food purees. Other staples I’ve used in the past are luna bars, meal replacement drinks, graham crackers, but now I try to opt for something a little more nutrient dense. But basically you just need packable food that won’t go bad and won’t make you sick or symptomatic.

And yes, your bag will be comically large.

(dumps large bag)

2) Ask to talk to the Chef

Especially if you have really complicated dietary requirements, going to the source of your food is often the best. Besides getting real answers about how the food is prepared instead of the waiter guessing, you’ll get a clear idea of how receptive the chef is to modifying the food for you before you commit to an order.

I printed out restaurant cards but haven’t found them useful as of yet.

Be sure to use the phrase “it will make me sick.” Otherwise they might think you’re just on a new fad diet and they might blow you off and tell you what you want to hear. The thought of a customer puking in their bathroom tends to motivate them to fess up about their real ingredients.

If you’re at a chain restaurant, ask to see dietary information because they almost all provide that now. But, the flip side of that is that if that information is provided, it probably means it is highly processed foods that come out of a plastic bag. Might not be the best food for you and you might wanna rethink eating there.

Which you can totally do! Because tip #3 is…

3) Don’t Eat the Restaurant Food

That seems kind of counter productive. But if you think about the enjoyment factor you get out of eating at a restaurant it’s not just eating the food. It’s also the atmosphere and, generally, the company you’re eating with. The way I approach eating out with friends is, unless I have a specific place that I know has food for me that I ask people to go to with me, I eat an hour or two before I go out. If I find something I can eat at the restaurant, great! I’ll order it, eat a little, and save the rest for leftovers. If I don’t, I’ll either pull out one of my snacks — and if the waiter gives me a hard time…(squeezes apple pouch). Actually you just explain your situation, usually they’re pretty receptive. If they start to give you a hassle, if you throw in the phrase “American with Disabilities Act,” they usually just do what you ask. It’s one of the magical phrases, like “it will make me sick.” One other thing that they fear besides cleaning up puke? Cleaning up a lawsuit!

Sometimes, though, when friends want to go someplace I know I won’t have anything to eat, like McDonalds, or I don’t feel safe “risking it” that day because I’m symptomatic, I plan specifically not to eat at the restaurant.  This sounds depressing but it’s really all about the mindset. You’re not there for the food, you’re there to hang with your friends, family, or significant other, whoever. It might feel strange at first, which is why it’s probably good to pack a snack just so you can feel like you’re eating with them, but after the first two times it will start to feel natural.

Assure your friends that it doesn’t bother you and that you are enjoying yourself as well. Also make sure they understand not to tempt you with the “just one bite” thing.

“C’mon, just one bite won’t hurt, will it?”

Yeah, it will.

This is about them wanting you to be happy with the situation, too, so just explain that you’re much happier without risking the extra symptoms and enjoying spending time with them. Be open and honest with your friends so they understand your mindset and know best how to accommodate your needs, because everyone is different in how they want to be treated in situations like this. So…throw them a bone! Help them help you.

You will get weird looks from the waiters, but that’s something you can laugh about. My friends and I always look forward to the “oh, she’s anorexic” look. We relish it.

Because in these situations you gotta laugh or cry, and as Kurt Vonnegut says, “I prefer to laugh because there’s less cleaning up afterwards.” 

Tell me your own tips for dining out with dietary restrictions in comments and check out more tips for people with chronic illnesses on spoonshares.com. Sending spoons and love, take care!

About the Author:

Leah is a 24 years old suburb-of-Philly native. She has gastroparesis, a feeding tube, and a battery operated stomach. She is the proprietor of this site, as well as the sassy Disney blog The Magical World Of, and a contributor to the new podcast Media Matters.   

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