15 Things I Wish I Knew When I Was Diagnosed with a Chronic Illness14 min read

When I was diagnosed with Idiopathic Intracranial Hypertension, I left the doctor’s office with more questions than answers. There are so many things that I wish I knew when I was diagnosed with a chronic illness.

I guess I expected to be given more information about what to expect, and all the ways that my life would change.

Instead, I was handed a prescription, pretty much told “good luck with that”, and sent on my (not so) merry way. I had no idea how to begin to process what this diagnosis meant, or how my life would be forever changed, and how I was leaving that office a completely different person than the one who walked in.

Looking back to that day in 2018 when I was diagnosed, here are the 15 things that I wish I knew when I was diagnosed with a chronic illness. I’m sharing these in the hopes that if you’re newly diagnosed, you’ll get some of the emotional support I wish I had at that time.

And if you’ve been diagnosed for a while now, I hope this post still helps you feel supported in moving forward and thriving through life with a chronic illness (or a few!).

Disclaimer: While I talk about my own experience, and information based on my own research, and offer tips for maintaining wellness while dealing with a chronic illness, I’m not a licensed medical physician, psychotherapist, or psychologist, and I’m not offering medical or psychiatric advice.

For my full disclaimer policy, go here.

15 Things That I Wish I Knew When I Was Diagnosed with a Chronic Illness

Get used to people telling you “I hope you feel better soon” and trying to find a positive side to things – even if you’re telling them how horrible things are.

1. • While they surely mean well, this can be hard to hear when you’ve been diagnosed with a chronic illness and may never really “feel better”. There’s no right or wrong way to deal with this – it may not bother you, you may wish to confront them, or simply let it go. My experience has been to accept the well-wishes while also making sure I have a few supportive spoonie friends I can go to about how frustrating it is to hear this phrase from people who simply don’t get how inappropriate this phrase can feel. 

It’s a good idea to find people you can be real with about your illness.

• • Whether in person or online, having the support of other spoonies who can really understand where you’re coming from is essential to navigating life with chronic illness. They’ll be understanding of the complex emotions and situations chronic illness can bring to your life.

You are your own best advocate.

• • Do your research and don’t be afraid to speak up when you disagree with doctors and to fire those who aren’t a good fit. Yes, it’s exhausting, but it’s worth the fight to find a medical team that listens to you, takes you seriously, and is willing to expand their experience and knowledge when needed

• Your self-image is probably going to change.

• Getting diagnosed with a chronic illness can mean that some of your capabilities can change, and this can lead to a shift in your self-image. The good news is that this doesn’t have to be permanent, and is something that can definitely fluctuate based on your situation and your mindset. One great practice to help with this is the use of affirmations. I’ve got a great printable you can download for free here that includes 10 affirmations crafted just for those with chronic illnesses.

• Your whole life may change, or it may stay the same.

• Sometimes chronic illnesses can have a drastic impact on your life. And sometimes, the illness is so benign that it’s sort of just there in the background. The important thing to know is that either of these experiences can shift at any time, and while staying present in your current experience can be helpful and is it’s also important to acknowledge and prepare for a wide range of possibilities.

• Naming your illness doesn’t change your experience – or your worth.

• If you’ve been symptomatic for a while and are just now getting an official diagnosis, this can seem like a big relief. But you may also feel discouraged or distressed by the diagnosis of a major illness – and that’s normal, too. But remember that just because you name something, doesn’t mean you’re doomed to a certain trajectory or experience. Every body and every experience is different, and how your body is experiencing your illness won’t change just because you’ve got a name for it. So while it’s 100% important and helpful for a myriad of reasons to have a diagnosis, it’s also important not to cling to that diagnosis, which brings me to the next thing I wish I knew when I was diagnosed…

• Don’t dwell on the scary possibilities of your illness, instead, focus on your current experience.

• IIH has some pretty scary possibilities. I’m very fortunate to not be severely affected by the majority of these. And when I was first diagnosed, I was so terrified of each of these things. But 4 years later, my experience hasn’t changed much. It’s gotten a little better now that I’ve learned to adjust my life to it. So yes – be aware of the common symptoms and trajectories of your particular illness. But know that it doesn’t necessarily mean that will be your experience. Take it one day, or one moment, or one breath at a time.

• People will tell you that focusing on your chronic illness is just focusing on the negative – and they’re wrong every single time.

  • Our society has this weird obsession with “positive vibes only” – aka toxic positivity. And you’ll usually hear this suggestion from people who don’t have the first clue about what it’s like to live with a chronic illness. Focusing on your illness and the impact it has on your life is survival. While it’s important to also focus on the joys and possibilities your life still holds (they exist, I promise!), it’d be extremely irresponsible to ignore the negative things that chronic illness brings to your life.

• There’s a good chance your 1 diagnosis is going to come with some comorbidities (other conditions that are caused or exacerbated by one illness or condition – like brain fog & chronic fatigue caused by the symptoms of IIH).

  • So many illnesses have so many other conditions tied to them, and it can be so hard and confusing to try to untangle them. This is definitely not something everyone experiences, but it is something to keep in mind as you begin to adjust to living with a chronic illness. And – if you notice any new symptoms pop up, it’s always recommended to seek the help of your healthcare provider for this.

• People are going to give you unsolicited advice and swear if you’d just drink more water/do yoga/take this supplement/use this oil/see this practitioner/meditate more that you’d feel better.

  • Again, they probably mean well, but it’s really important to set boundaries when people do this. If they a) don’t live with your condition or b) aren’t a medical professional who specializes in your condition, they’re probably wrong. There’s nothing wrong with trying these things as part of an overall wellness plan, but I don’t believe in silver bullet answers for ANYTHING. And also – if it were that easy to treat these rare & chronic conditions…well, they wouldn’t be rare & chronic, would they?

• You’re probably going to have to give up some of your favorite things to manage your symptoms & ensure your safety.

  • For me, working full-time, singing in my church choir and driving were the first major things that I chose to give up to keep myself (and others) safe and to eliminate some triggers for my symptoms. It may take some time to figure this out, and it’s really no fun to lose things because of you your illness. But this can also be an empowering thing because by releasing things you know are causing you harm, you can potentially eliminate some flare-ups and experience more joy and ease. And overall, that’s what’s most important, right?

• It’s ok to not see any silver linings.

  • Again – chronic illness and toxic positivity just aren’t made for each other, in my opinion. Living with a chronic illness can be extremely challenging, and it’s ok to be upset about this! Just make sure to seek the help of a licensed professional if you experience long-term depression or other mental health concerns in response to your diagnosis.

• You’re probably going to have less in common with those in your life who don’t have chronic conditions.

  • Healthy people just don’t get what it’s like to live with a chronic illness. They may pull away from you because of this. They may also no longer know how to relate to you, be scared of your illness because it reminds them of their own mortality, or maybe what you had in common is no longer something you can take part in because of your illness. This is why it’s always recommended to seek out friendships and/or support groups with others who have conditions similar to yours. Thankfully, the internet is a great resource for connecting those with chronic illnesses with each other!

• No amount of preparation will ever really have you ready for a life-changing chronic illness diagnosis.

  • Before I got my official diagnosis and was just dealing with the possibility of IIH, my husband and I did some research to sort of know what to expect and maybe attempt to soften the blow should a diagnosis happen. It didn’t work. I was still devastated when I was diagnosed and was in shock for some time afterward. It’s up to you to decide if preemptive research is something that would be helpful for you, but it’s important to know that it is not going to eliminate the emotions and challenges that come with being diagnosed with a chronic illness.

• Your diagnosis does not determine your worth. Period.

  • You are a precious part of this world, and nothing will change that. You still have so much to give, and there is still so much joy and love for you to experience. The “hows” might change, but you still have a purpose. I hope this post and blog are a place you can come to when you feel otherwise.

Ready to thrive through chronic illness with courage and grace? Explore my ‘Guided to Thrive’ coaching service and embark on your personalized journey to empowerment. Click the button below to learn more and take the first step toward a brighter, more resilient future.

May your flares be few and your spoons be plenty,