Updated: May 26, 2020
By Stephanie | @chronically.stephanie | July 6, 2019
You just received a diagnosis. Often we think of receiving a diagnosis as an ending. Mystery solved and now we can move on. Not so fast. Especially if your diagnosis is a chronic illness. Even though I’ve received many diagnoses over the past several years, I never feel prepared and each new “answer” brings with it so many new questions. These new questions can create overwhelm, fear, and isolation.
It’s important to treat yourself with grace and tenderness, no matter if this is your first diagnosis or your tenth.
Allow yourself to grieve.
In my experience, doctors try to cushion news of chronic illness with the idea that there is relief in knowing. While this can be true, implying that we should simply feel relieved to have a label isn’t the most supportive approach. It’s okay to be sad. It’s okay to feel like this isn’t fair. It’s okay to believe that you don’t deserve this. It’s okay to cry or yell or be silent. While a chronic illness diagnosis might bring a sense of relief, next steps, or validation, it can also force you to let go of the hope that nothing is actually wrong. Mourn that loss.
Find a therapist who works with chronically ill clients.
Any new diagnosis will take time and space to process. But chronic illness is a forever reality. Working with a therapist who is familiar with chronic illness can be incredibly supportive. Knowing that there isn’t a quick [or even slow] fix to your illness, consistent therapy can provide you a safe place to feel all of the feels. This isn’t a situation where you can learn a few new tools, apply them broadly to your life, and move on.
Don’t make it your job to educate everyone.
You don’t need to prove or justify your illness. Nor do you have to be a human version of Google. I get it - you say that you have Ehlers-Danlos Syndrome and the other person tilts their head to the side and looks confused. Instead of giving your very well rehearsed presentation on your illness, kindly offer to send them an article to read or terms to look up later. Constantly explaining your illness can be exhausting and leave you feeling like you have to justify the realness of your illness. When you call to schedule an appointment with a new medical professional, ask if they are familiar with your illness. If not, try to find someone who has worked with similar patients, if possible.
Trust your own experience and listen to your body.
No two people or illnesses are the same. Even if you are working with an expert on your illness, don’t trust them more than you trust yourself. You know what is “typical” for you and what is new or different. You know what triggers a flare-up or what your symptoms are more than a standard checklist. If something feels off, don’t ignore it, explore it. If the healing protocol that has helped so many other people isn’t helping you, let your medical team know. Don’t discount the expertise you have based on living in your own body for all of this time.
Seek out community.
A chronic illness diagnosis can be isolating. You might be home more because getting out of bed is too much. It might feel like your friends and family don’t understand what you’re going through. You might not be able to do all of the things that you used to do in the same way that you used to do them. And it might feel like you are the only person dealing with this illness. Finding a community of people living with chronic illness is so important. Join Facebook support groups, attend local meetups, and search for your illness on Instagram. You don’t need to ditch all of your other friends but finding a few people who understand your experience without you needing to explain is so nourishing. Especially since you might find yourself on the sidelines sometimes because you simply aren’t well enough to get into the game. Having a virtual community can allow you to connect and be seen and supported from the comfort of your bed or treatment room or hospital.
Above all else, give yourself permission to take it minute by minute. You don’t have to have it all figured out yet or ever. Trust yourself and ask for what you need.
Written by Stephanie Kirylych. Stephanie is the host of RETHINKING IT, a podcast about changing our minds. She also shares her journey striving to find wholeness and a peaceful coexistence with chronic illness on her blog and Instagram.