6 Tips for 'Adulting' With a Chronic Illness

Let’s all take a moment to agree that adulthood is complicated.

I’m 24 and fairly new to adulthood still. I finished grad school a year and a half ago and am still participating in the whole “fake it ’til you make it” philosophy. I’m not ashamed that my dad still fills out my tax paperwork for me. On the other hand, I feel like I’ve been an adult my whole life. Chronic illness forces you to grow up faster than you might otherwise. And honestly, my name is Alice, I have arthritis and I basket weave. On paper, I’m 85 years old and have been for years.

My transition into adulthood included things faced by many 20-somethings, like paying bills or taking on buying a house. (Which, by the way, is terrifying. Although, a mortgage really puts student loans into perspective.) Becoming an adult involves a lot of trial and error. In case you were wondering, it is apparently no longer socially acceptable to wear a messy bun to work when you’re 24. I lost count of the number of coworkers asking if I was feeling OK.

On top of those things, there are also unique challenges many people may not deal with as a 24-year-old – such as filing an appeal with your health insurance company…and then filing another appeal…and then another. (Suck it, case manager. I win.) You have to schedule your own appointments and refill your own prescriptions. As an adult, you need to become your own best advocate. When you’re a kid, adults make a lot of your decisions. Once you’re an adult, you have to step up and take charge. This means making sure you understand your health conditions, tracking your own medications, scheduling your own doctor appointments, etc. Here are six tips for “adulting” when you have a chronic illness:

1. Make sure you understand your health conditions. It always surprises me when I meet individuals who have a chronic condition but don’t actually know anything about it. Knowledge is power. Make sure you are aware of your sources and who is informing your thinking. Be cautious with which online sources you read. Take everything on WebMD with a grain of salt. Talk to your doctors, and don’t be afraid to ask questions. I’m a very intelligent human being, and I frequently ask my doctor to rephrase using smaller words and pictures if necessary. Saying you don’t understand the medical jargon doesn’t mean you aren’t smart. It just means you didn’t go to medical school. Chances are, you didn’t, so it’s not like it’s something to be ashamed of.

2. Keep track of your medications. I cannot overstate how important this is. I’m not asking you to memorize all the details. It never hurts to know all that, but it can run together when you take 15 prescriptions. I get that. This is what medication lists are for. You’ll want to include both drug name and the generic name, the dosage, why you are taking it, who prescribed it, when you started taking it and any potential interactions. Make sure any doctors making adjustments or adding a medication look at your list. This is particularly important in places like the ER. Those doctors aren’t familiar with your chart, so you can’t blame them for having no idea what medications you take.

3. Get comfortable seeing your doctor. Also get comfortable being honest with them. There’s a lot of sh*t I would rather not talk about with my GI doc (pun completely intended), but I don’t have a choice. Also, there’s really no good reason to lie to your doctor. Be willing to try new things. However, if you aren’t going to follow recommendations, tell them that. Find a different solution you can and will do. None of my doctors want me drinking coffee. I get that it. Doesn’t mean I’m going to stop drinking coffee. I’m very clear about this. If they want me functional, they will let me be strongly caffeinated at all times. I told my family doctor it was either coffee or hard drugs, and she could pick. She chose coffee. I’m glad, because I feel like coffee is probably cheaper and I now have a mortgage to deal with.

4. Understand that having a disability or chronic condition doesn’t make you entitled to anything. You may have been dealt a difficult hand in life. I’m sorry about that. I’m not saying it’s fair, but it’s how things are. You may have to work harder to achieve things, so get used to it. Use resources available to you to help level the playing field, but don’t expect anything to just be handed to you. Being sick doesn’t make you entitled. The world doesn’t owe you anything. I’m sorry if you find this offensive. It’s true, though. Everyone has something that complicates their life. Yours happens to be an illness or health issue. The sooner you stop expecting the world to do things for you, the sooner you can step up and live your life. Don’t use your illness as an excuse.

5. Make smart choices. If you know you need 10 hours of sleep to be functional, don’t stay up late watching talk shows. If you are on medications that interact with alcohol, don’t drink. Don’t eat things you know will make you sick. I get that it’s easier said than done. I can’t eat solid food. I frequently crave things I shouldn’t have. Doesn’t mean I’m going to go eat them, though. As much as I would love a hamburger, I really don’t want to be throwing it up three days later.

6. Organize your medical records. If you look up “most organized medical records complete with color coordination and different sections for various specialties,” my name will show up. I’m not messing around when it comes to records. The more you have and the better they are organized, the easier your life will be. You may not think a doctor will ever ask for a list of all biological drugs you’ve ever taken, the dates you took them and why you stopped – but it totally happens. There’s not one good way to organize your records – do what works for you.

Now, all this sounds well and good. I like to think I do all of those things. Don’t think, however, that doing them magically makes adulthood easy. It doesn’t. I still give myself a pep talk most mornings that involves threatening various organs if they don’t cooperate. Something along the lines of: “I am a grown a** adult. I have my sh*t together. I will not fail at life today. Stomach, if you don’t keep your crap together, I will beat you.” Just remember, adulting is hard for all of us, so you’re not alone.

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional.

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