5 Things I Wish I Knew About Getting Diagnosed With A Chronic Illness
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Disclaimers : This is not medical advice or information and based on personal experience living with chronic illnesses. This site contains product affiliate links. We may receive a commission if you make a purchase after clicking on one of these links.
When I was diagnosed with endometriosis at 19, I had ZERO idea how it would effect the rest of my life. Yes, there was physical pain, but it also took a toll on me mentally. And there wasn’t much information available to me at the time — I felt like no one was talking about it!
But over the years, I’ve learned to how to conserve my energy, be more efficient, and take care of myself without shame or guilt. And since then, I’ve added another diagnosis (fibromyalgia) to the mix! Once I had to learn how to manage two different sets of symptoms, doctors, pain, and medications, I didn’t really have a choice but to get organized!
In the chronic illness community, there is a LOT of overwhelm and confusion around how to keep functioning as a person with all the symptoms that go along with your diagnosis. It’s hard to get what you need from friends and family who haven’t personally battled a chronic illness.
You feel guilty when you cancel plans at the last minute.
You go to the doctor for help, but sometimes you leave with more questions than answers.
You get upset with your loved ones who think they’re helping but they’re actually just making the situation worse.
You feel isolated by everything that’s going on internally, and you miss who you used to be.
There are SO many things I wish I could tell my 19-year-old self now, especially after having a second diagnosis now under my belt. So the next best thing to figuring out time travel and giving my younger self a hug is sharing everything I wish I knew about living with chronic illness with other warriors like YOU!
In this blog we’ll cover so many things I needed to hear back then, including:
✨ The permission I gave myself to enjoy my life, flares and all
✨ The essential mindset shift I had to make that changed everything
✨ How to protect my energy from draining tasks, situations, and people
✨ How to create routines around the things I have to do every day
✨ My best tip for surviving all 137,000 of my medical appointments
Just know that if any of this resonates with you, you’re NOT alone! In this blog, I’ll share some of my best tips on how to organize your life and empower yourself to live the fulfilled life you deserve.
5 Things You Need To Hear If You Have a Chronic Illness
1. There’s room for all the feelings
When you got diagnosed, did you feel a mixture of sad, scared, relieved, confused, angry, or some other cocktail of emotions? Because that is SO normal, and you have every right to feel all the things!
Personally, I was glad to know I could finally put a name on the thing that had caused me so much pain. And then I was angry to realize that I’d have to deal with the pain for literally my entire life. When I’m feeling good, I feel unstoppable. When I’m in a flare, I feel like I’ll never get that energy back again.
So of course feeling like you’re on an emotional and physical rollercoaster makes sense! Just remind yourself that you got through your hardest flare days, and you’ll get through this one too. This mindset shift helped me realize that I CAN live my best life, as long as I design it to be flare-friendly and flexible. Which is exactly what we teach in our signature program, Chronically Fulfilled Life!
However you react to your diagnosis, just remember that your feelings are TOTALLY VALID. You have every right to feel scared, relieved, angry, confused, and more. There’s no “right” way to react to such life-changing news.
You’ll probably go through the 5 stages of grief on your journey to accepting what this all means for your future. There’s a part of you that will always miss the “old you” and wish that things could be different. That’s okay, because even though your life looks different than you probably planned, there’s still SO much you can do to create a life you love.
Take your time processing all of this information! If you can, try journaling or documenting your thoughts in whichever way feels best for you. Sometimes it’s helpful just to get everything out of your head to lighten the mental load.
2. Your pain is valid
I can’t tell you how many times I’ve told myself that I was overreacting about my symptoms or pushed through the pain because I didn’t want to let someone else down. It’s the most frustrating feeling to gaslight yourself into believing that the pain you feel isn’t real. Or that you’re lazy because you desperately want to take a nap in the middle of the day. Or that you “should” have enough energy to do all the things, but because you don’t – you must be the problem.
I’m here to tell you that your pain IS completely valid, and it’s not all in your head. And it’s not your fault that you don’t have the same level of energy as someone else. Comparing yourself to a healthy person isn’t going to be helpful, especially if you’re basing it off what you see on social media!
3. Set all the boundaries you need
I know people toss around the term boundaries a lot, but they’re actually soooo important when you have a chronic illness. The reason some folks struggle with them is for 2 reasons:
When you set a boundary, people can react negatively. What helps is when you feel confident in the boundaries you set, and know that you’re putting them in place to protect yourself. If you’re a people pleaser, this is such a tough hurdle to overcome! But trust me that it’s worth it in the long run.
Holding boundaries is almost as tough as setting them in the first place. People will absolutely push them and say things like, “It can’t be that bad.” or “Yeah, I’m in pain too.” when in reality they don’t understand what you’re going through at all. If it helps, you can send them a link to this blog about how loved ones can be helpful instead of harmful towards the chronically ill people in their lives!
One thing you might notice when you get diagnosed with a chronic illness is that some people in your life will stop showing up for you. If that happens, try not to spend too much energy overthinking it! Instead, pay attention to the people who DO show up and offer to support you as you navigate this new identity. And ask them for help when you can! It’s better to be clear about what you need than to try and do it all yourself.
4. Energy is your most valuable asset
I’m a huge fan of the Spoon Theory because I think it’s an incredible way to explain how finite our energy is on a daily basis as chronically ill warriors. You truly never know what kind of curveball your body will throw at you each day, so creating systems is the best way to protect yourself from unexpected flares totally derailing your plans!
Systems (aka repeatable routines) are my secret to having more energy to spend on the things I LOVE! Snag our free resource all about saving spoons and making small changes that add up to a big impact in your life right here.
The biggest thing to remember here is that you DO have control over how you spend your energy, even if it feels like you don’t right now. Once you get in the habit of viewing everything you do through a spoon-saving lens, the game is forever changed!
5. You are in control of your medical care
This one’s HUGE for me. When I started going to all these medical appointments, I did a few things that were a huge disservice to myself.
I would rely on my memory to remind me where I was supposed to go, when to go there, and why.
I’d forget what I wanted to ask the doctor as soon as they got in the room.
I believed that the medical professionals had my best interests at heart (some do, but more on that later).
I thought I didn’t have a choice when it came to which doctors I saw or which treatments I tried.
Once you have a real diagnoses and some definitive answers, it’s time to educate yourself on your illness. Sometimes, doing this can cause some unpleasant feelings to come up, especially when you’re looking at how this illness could impact your life in the future.
Try to remember that it’s okay to not be okay in those moments. Dealing with new pain and symptoms is hard, but understanding more about your illness is easier now than ever.
Use the internet to learn more about your specific illness, head to the library for access to tons of resources, and ask your doctors for more information (or suggested resources). Don’t rely on your doctor to tell you everything you need to know.
Take initiative to become an expert in understanding your body and this illness so you can better advocate for yourself as it progresses (see ‘Be Your Own Advocate’ below for more!). Make sure you check that any resources you read are vetted and backed by facts — not all sources were created equal!
It took me a longgg time to realize that the only person who’s going to be 110% invested in my medical care, is me. Some doctors mean well, but they see dozens of patients per day and can’t remember everything about your specific situation. Hopefully this doesn’t happen to you, but sometimes I’ve felt gaslit by doctors or like just another check box on their to-do list.
If you feel like your doctor or specialist isn’t a good fit for the level of care you want (or even just not aligned with your values), you have the power to explore other options!
And this is just the tip of the iceberg when it comes to feeling super confident about having everything you need when you show up to your appointment so you make the most of your time in the exam room! We have a whole workshop dedicated to preparing for medical appointments so you can advocate for yourself and your health.
What To Do When You Get Diagnosed With a Chronic Illness
Now that you know everything I WISH someone had told me all those years ago, you can start to get familiar with this new identity and how you’re going to be a chronically ill badass! If you feel like you need more support and clarity on how to create your most flare-friendly life, I’ve got you! Schedule a 1:1 coaching session with me (Alyssa Truelove, your Chronic Illness Bestie) and use my brain for all the spoon-saving hacks I have! I can’t wait to connect and support you on this journey 💕
