Who are you when illness is part of your life? That’s the question thousands of people face every year as we see more and more people becoming and being diagnosed as chronically ill. In the wake of the Covid-19 pandemic, we saw a huge surge of people experiencing chronic illness, whether through long covid or through other disorders like POTS that can be triggered by acute illnesses like covid. And for many of those people, there was a journey that started with the feeling, “Something isn’t right,” spoken in a whisper before ever being said aloud in a doctor’s office.
It’s all too common for chronic illness to involve knowing that something is wrong long before anyone else understands what you mean. This leads to late nights spent online, combing medical journals and Reddit posts alike in search of answers. Trying to talk about your pain or your loss of ability with your loved ones and struggling to find the words to help them understand. The fear and fury of doctors refusing to run tests or misdiagnosing you. Chronic illnesses have a habit of running together, so if you identify one, it’s likely there are more lurking under the surface.
So are we really surprised that chronic illness crosses paths with our sense of identity? This article will discuss ways that identity comes into play when navigating chronic illness, along with some ideas on how to integrate the two.
Before I go on, I should say, I’m a chronically ill therapist with a focus in C-PTSD and identity work. In September, I led a short-term group on this exact topic, called Identity & Chronic Illness. That group has ended for now, but I have an open and ongoing group made just for people with chronic illness to connect with others who get it. If that sounds like the kind of group you need, I encourage you to check out Chronically Ill Connections. We’d love to have you!
On this blog, I talk about how chronic illness shows up in therapy, how trauma therapy looks different from “normal talk therapy,” what makes group therapy so special, and a bunch of other things! Come along for the ride by signing up to get on my email list.
The Power of Labels
What we call things gives them power, or takes power away. This concept isn’t unique to chronic illness, but it does show up in a unique way: through diagnosis, or the lack of diagnosis. Did you know that the amount of time people spend between developing symptoms of a chronic illness and having that illness diagnosed often exceeds 5 or more years? It’s possible for someone to spend decades without a name for their chronic illness. That doesn’t mean they aren’t living a chronically ill life.
What it does is bar people from services made specifically for chronic illness, like disability parking placards, workplace or school accommodations, and many kinds of medication for symptoms and pain. Without these things, chronic illness is harder to manage, and without acknowledgement from our government and medical systems and services, people often feel gaslit about their own lives.
As someone with unlabeled chronic illness loses their previous abilities and gains increasing symptoms and pain, they often feel disconnected from their sense of “who they really are.” Without a name for what’s happening to them, it’s almost impossible to integrate this new piece of their lives into their self-concept, meaning that their sense of self fractures. Over and over in my therapy practice, I hear clients tell me, “I thought I was just broken,” or “I’m a shadow of myself,” or even “I’ve lost myself.” And it’s not true. People with chronic illness are still their full selves. But it’s the label that helps begin the process of integration of illness into identity.
Taking Ownership of Identity
The good news is that you don’t have to wait for a diagnosis to start this process for yourself. Let me be clear: your pain is valid, even if it is nameless. Your struggles are real, even if they are nameless. If you experience chronic pain, then you experience chronic pain, whether a medical professional has determined the cause for that pain or not. Your experience is true, regardless of the technicalities.
If you are experiencing chronic illness for the first time and don’t know how this fits into your life and your identity, then you’re at the start of a journey that will continue evolving just as you do all throughout your life. Identity is something we develop over a lifetime, not something we choose as a teenager and get stuck with. Here are a few ideas for integrating your chronic illness into your self-concept.
1. Consider Accommodating Yourself on Your Own Terms
Even if you don’t have formal accommodations yet, there are often ways you can begin considering your needs and your comfort on your own with the help of those around you. Think about something you consider part of your identity, like a hobby you love, or something you feel enriched by doing. Start with just one thing. Try looking up how people with limited ability do that hobby or activity. For example, if you’re a hiker, check out ADA accessible hikes. Finding ways to enjoy the same things you’ve always loved while honoring the needs of your body helps to remind you that both can exist at once. You don’t have to choose between parts of yourself.
2. Look Up Stories about Chronically Ill People Doing What You Love
Did you know that Olympian swimmer Katie Ledecky has POTS? Or that famous artist Frida Kahlo experienced chronic pain and painted many of her most famous works from bed? History and modern life are filled with examples of people with chronic illness adjusting the way they live to continue doing what they love. We won’t all reach the great heights of an Olympian or famous painter, but we can still connect with their lives, their struggles, and their journey to success.
Part of the journey to diagnosis often includes lots of searching the web for stories of others with similar symptoms, and frequently includes social media sites like Reddit, Facebook, or TikTok. This can be very helpful and can provide a lot of guidance and support, but unfortunately it can also expose you to a lot of the hardest side of chronic illness before showing you any of the hope. By intentionally looking up people who successfully continued doing the things you love doing while being chronically ill, you make sure to give yourself that dose of hope while still learning more about your own situation. When you see how others before you have held onto their sense of self while chronically ill, it becomes easier to believe this is something you can do, too.
3. Get Outside Help if You Need It
I’ve given you a few ideas of places to start when it comes to integrating chronic illness into your identity, and I hope they help. And, I also know from experience that this can be a long road, and it can be a hard one. If you find yourself struggling with your self-worth or your identity as a result of your chronic illness, either before or even after diagnosis, know that you aren’t alone, and this isn’t the end of the story. Help is available. Find a friend or loved one you can talk more openly with. Join a therapy group like my Chronically Ill Connections. Or—or perhaps even and—consider getting some one-on-one individual therapy to help you navigate this path and equip you for the journey. Remember, you don’t have to have a diagnosis to need help, or to be worthy of help. You already are.
I specialize in helping folks with C-PTSD navigate chronic illness and identity formation, and I use attachment theory and trauma-informed, person-centered care to do it. I can see anyone in Oregon over telehealth, and I have an in-person office in Newberg for people around Yamhill county on Fridays. Therapy with me involves coping skills to help you stabilize, and deeper work to help you get to the root of things.
A lot of my clients tell me they’ve gotten so good at being who everyone needs that they’re not sure anyone actually knows the real person behind the mask. I help people in those shoes build a life where you get to be fully yourself and still feel deeply connected to the people around you. If that sounds like you, let’s talk and see if we’re a good fit. I can’t wait to meet you!
No AI used ever in the making of this (or any other) post :)