Four Things to Know When Diagnosed with a Chronic Illness
Note: As I work on becoming more transparent with my life with chronic illness, I’m featuring a blog post I wrote over three years ago, not too long after being diagnosed with Psoriatic Arthritis. I’d love to hear your story, too! Email me at hello AT brendadalton.com.
New to the world of Psoriatic Arthritis (PsA) or chronic illness? Hey! Me, too. About six months ago, while on a beach vacation with family, I woke up with major wrist pain. It escalated. Big time. Four doctors, five months, and several “it’s all in your head/nothing we can do’s” later, I was diagnosed with Psoriatic Arthritis by a rheumatologist. Here’s a bit of a crash course for staying sane when you’re diagnosed.
know your triggers
Triggers are different for everyone. Sure, there are some triggers that are across the board, but even then, it is to varying levels. A common one for PsA pals is gluten. Luckily, I didn’t have to go through the process of learning about PsA and deal with learning how to live without crusty garlic bread, chicken nuggets and the ease of eating out anywhere, anytime.
Why? Because I was already gluten sensitive! Ha.
Okay, I’m not laughing at you, if you’re trying to figure out your triggers and find out gluten is one of them. I’m laughing with you. Really. It may feel like the end of the world, but think about this: You’re not alone and it’s 2016.
Gluten-free foods are a lot more common than ever before. Sure, you’ll still get people who have no idea what gluten is and you’ll get eye-rolls when you ask for GF food because they think you’re on a “fad diet” and sometimes, if you’re not careful, you’ll get glutened (even in your own home because you forgot a brand was full of gluten).
Personally, my triggers are gluten, excess sugar, alcohol, stress/anxiety and cold fronts. Not counting the obvious triggers of too much physical activity. Others find nightshades (tomatoes, eggplants, etc.), rain or high humidity put them out of commission.
know your limits
This one is important. I’ve always been the type of person who can be up and going all day. In fact, before I segued into running my own business, I had a job that often kept me on my feet anywhere from four to 14+ hours straight.
As time wore on, fatigue set in. And it hit quickly. Frustration set in when going on a day trip or shopping for a day would leave me first, in absolute pain and second, fatigued and with burning joints for a day or three after.
I’ve learned that during holidays, visiting family, planning outings, I have to plan more than the event itself. It’s important for me to plan my week or at the very least, the day before and after the event.
It’s kind of a bummer that there are no spontaneous zip lining adventures or exploring, kayaking and going out for dinner in one day for me anymore, but man, do I thank myself when I allow a little self-care.
It has taken me months to be okay with taking a quick nap or even laying down for a little while in between client work.
It’s okay to have a rest. Don’t push yourself. It’s a battle – I consistently try to do too much and regret it the next day.
know your support system
Do you know why there are many players on a baseball team? Because they would look ridiculous trying to play pitcher and outfielder, that’s why. And they’d probably die of a heart attack from all of the running and stress.
Find your team. Your support system. A spouse, a parent, a sibling, a friend. There are even in-person and online support groups (hello, Facebook groups!) specifically for Psoriatic Arthritis, Rheumatoid Arthritis and more.
Have them hold you accountable. We all want to be strong and take care of ourselves, but with autoimmune diseases and chronic illnesses… that not always going to be easy.
It’s a hard pill to swallow. You’re going to get frustrated with your support system when they tell you to take it easy. You may feel pitied. You may even feel like you’re not heard. That’s normal.
Be open, honest and respectful with your support system. It’s okay to jump in the car with your mom and say, “I’m having a bad day.” Just please, please, please take advantage of your good and great days (or hours) and shout it from the rooftop.
Smile even when your arthritis hits your jaw and you can barely chew. Okay, that suggestion is way too chummy and inspirational for me, especially because wow, it really does suck when you try to smile with your arthritis jaw.
know your humor
Maybe that last sentence could have fallen into this category. I was in a pit of despair when PsA started to take a toll on me and especially before I found the right doctor and started treatment. In fact, it was a little like the stages of grief.
I come from a family that laughs, teases, loves sarcasm and makes jokes a ton. It’s a fact of life. There is no way I was going to let something like a chronic illness take the wind out of my sails on a daily basis.
Sausage fingers? Grab a bun and mustard. Arthritis just before you turn 30? Bring on the low-sugar, gluten-free cake and enough candles to blow the house down!
It’s okay to make fun of yourself. It’s okay to laugh at how our bodies are frankly, confused, and choose to fight against us. It’s okay to cry, too. Not everyday is going to be smiles, but trust me, you can laugh. You can power through. You got this.
