It seems like after being diagnosed with a chronic illness, all you ever do is talk about illness, but the words said aren’t the ones that capture the full breadth of your reality. Even the people who know you best - partners, children, friends, and, if you’re lucky, your medical team - have no idea the places your brain can take you. While 6 in 10 people in the United States experience chronic illness, living with disease is such an isolating experience.
The isolation can lead to questioning our sanity … Am I normal for having these thoughts? Am I alone? What does it say about me that I’m thinking this?
In an effort to support the idea of if you name it, you can tame it:
Here are six things people in St. Louis don’t talk about when you have a chronic illness or chronic pain.
People with chronic illness don’t talk about … the dance of working with health insurance.
While most Americans are aware of the woes of working with their health insurance companies, not everyone has insight into the dance that people living with chronic conditions must do to coordinate care. When you are sick, the things submitted to insurance add up … visits to your primary care physician, referrals to specialists, overnight observations, prescriptions, therapies, tests … the list goes on. It would be **lovely** for this list of endless things to be approved without question, but that’s not the case. There becomes a need to evaluate what to press insurance for so that when the next big _____ happens or is scheduled, it’s approved without a fight.
People with chronic pain don’t talk about … diseases other than cancer not being validated.
There’s no doubt that cancer is an ugly disease with treatment that absolutely sucks. We know that, though, because it’s talked about. There’s not news stories about the pain that people with arthritis feel, the embarrassment of Crohn’s symptoms, or the inability to stand upright for greater than 10 minutes for people experiencing POTS. Unfortunately, this validation is lacking in the medical community, too. Patients without visible illness too often hear that space or appointments are reserved for “really sick” people. Everyone with chronic illness deserves to be treated with respect and compassion, even if it’s not visible.
People with chronic illness don’t talk about … the fear of being labeled as a problem patient.
Being diagnosed and living with illness is uncharted territory for the patient. Every new symptom is terrifying, and let’s be real – Google doesn’t help. With that, though, a surprising number of patients opt to not connect with their providers about new symptoms, medication questions, scheduling concerns, and more out of fear of being labeled a problem patient … because being labeled as a “problem” could mean that help isn’t there when you need it down the line.
People with chronic pain don’t talk about … the mental gymnastics of how you’re feeling.
It should be as easy as good days feeling good and bad days feeling bad, but our brain takes us to other places. Good days can be ruined by feelings of imposter syndrome or second guessing our need for help. Good days can also complicate securing approval for various medical tests and be taken seriously – so now, we almost have to wish to feel bad? But then, the bad days come and we question if we will ever feel good or normal again? What a mess.
People don’t talk about … the grief of chronic illness.
Even before diagnosis, the grief of being ill is all-encompassing. It seems like reminders of health are everywhere - the stairs you can’t climb, the restaurants that no longer feel safe amidst a pandemic, the collection of medications on the counter, and more. What’s even worse is the question mark that lies ahead. Will it always feel this way? Will it feel worse? What will I miss out on because of disease? Instead of holding space for this grief, we hold ourselves to an impossible standard, thinking, I can’t complain. I can’t whine. I need to be grateful. While gratitude can be an important tool in your self-care toolbox, know that it doesn’t cancel out the grief of what you’re experiencing.
People with chronic illness and chronic pain don’t talk about … that life continues to go on, even if you’re sick.
If only being diagnosed with disease meant that we’ve met our quota of bad things to happen to us in our lifetime. Life continues to move forward, though. Cars break down. The lawn needs mowed. Kids need to be fed. Companies reorganize. Even if the things that happen aren’t bad (darn the grass for growing!), everyday tasks seem to take more energy than they did before when illness wasn’t at the center of your life. For some, this is alright - all that’s wanted after diagnosis is the normalcy of their pre-illness lives, while for others, it’s too much. Wherever you are with it is okay.
Find help with counseling for chronic illness or therapy for chronic pain in St. Louis
You deserve to talk about everything, especially when it comes to your chronic illness.
While it’s true that people don’t talk about illness, it doesn’t have to be that way. It’s helpful to have people validate your needs and have a glimpse of what it’s like to be carrying around the mental load of being sick. If you’d like to talk about the things that people don’t talk about, especially when it comes to chronic illness, reach out to our mental health team today. Our Ballwin-based counseling practice has therapists that specialize in working with people and their families who have chronic pain & illness. We’d love to get you started as soon as you are ready!
Additional Counseling Services At Marble Wellness in St. Louis, MO and Chicago, IL
Counseling services designed to help set you on a path of living a more fulfilled, calm, and happy life. We specialize in anxiety, depression, grief, chronic illness, therapy for men, couples, and maternal overwhelm. We can also help new moms with various postpartum concerns, moms in the thick of parenting, and moms with teens. We can also chat from wherever you are in the state with online therapy in Missouri and online therapy in Illinois. No matter where you are in your journey, we would love to support you.