By: Chronic Illness/Pain Specialist; Nicole Rhodes
Earlier this year, we shared with the Marble Wellness community six things people don’t talk about regarding chronic illness. We’ve always known this list wasn’t exhaustive; life and illness and people are much more complex than can be summed up in one blog post. The late fall and winter holidays can make chronic illness misunderstandings and ignorance even greater pain points, so we thought we could offer up another 500+ words of validation and awareness.
Here are five more things people don’t talk about – or don’t understand – regarding chronic illness.
1. People don’t talk about … the need for energy and histamine “math.”
Spoon Theory teaches us that we each have a certain amount of energy for each day. And for people who are sick, this energy can vary from day-to-day based on the weather, medication cycles, stress, pain, and so on. It becomes necessary to plan out major and minor tasks for the day – hair washing, appointments, meal prep, laundry, etc. – to survive. For people who experience mast cell diseases, this same math becomes necessary for evaluating the histamines they ingest each day. Can I have eggs and peaches today? How will my digestion be impacted by the dairy I consume? This math can contribute to even further decision fatigue.
2. People don’t talk about … the stress of finding a new provider.
To be fair, the stress of securing a new provider is a huge task for most people – getting scheduled with someone who is taking new patients, is in-network with your insurance, and in the general area you want to be seen is an incredible feat. Now consider if you are sick: you experience a super rare disease with limited specialists in the area. You have the energy to make 1, maybe 2, calls per day. Your calls go unanswered or met with callous remarks. After weeks of calling around, sourcing your social network for referrals you (might) trust, you find someone with an opening … five months out. You make it to the appointment, and … the provider says, “I can’t do anything for you” or “it’s all in your head.” Absolutely crushing. What do you do? Stick with a provider who doesn’t get it, or commit to another months-long cycle of finding someone who 1) believes you and 2) can help?
3. People don’t talk about … that you’re still a parent, even when you are really sick.
In our last blog post, we honored the idea that life goes on, even when you are sick. There’s no point where this is more blaringly obvious than watching your kids grow up in front of you. You miss events because pain keeps you in bed or you are at another medical appointment. More than that, you miss the everyday magic of being at home. And this is if you have help! It’s easy to be stressed about the arrangements that need to be made and sad for the things you feel you are missing. It takes *a lot* of work to see the things you still offer your kids, even if you aren’t the parent you visioned yourself to be.
4. People don’t talk about … not wanting people to see you ill.
We know that social isolation can impact mood, memory, cognition, sleep and more, all on top of the symptoms and side effects of living with illness. When you are sick, though, sometimes the absolute last thing you want to do is have people who you know see you as someone who is sick – the hair loss, changes in weight, limited diet, structured care routine, need for sleep, required positioning, etc. You know that these things will have an impact on your loved one’s mood, or worse: problem solving and minimizing your reality. You begin to avoid seeing the very people who might be exactly who you need.
5. People don’t talk about … you can’t just “go for a walk.”
Do you have a “just go for a walk” person in your life? What a gift it must be to believe that every person is capable of going for a walk and that it will fix whatever it is a person is experiencing. As if you haven’t considered that already! Yes, movement and fresh air help, but … not if it takes all the spoons or you haven’t built yourself up to a walk yet.
How does this list resonate with you?
As always, if you want to talk about the things people don’t talk about, practice establishing boundaries, or slowly take down the walls you’ve built, reach out to us to schedule an appointment. Marble Wellness has therapists that specialize in working with people and their families who have chronic illness.
We’d love to get you started as soon as you are ready!
We have a previous blog written by Marble Wellness Chronic Illness Specialist on Four Ways Therapy Can Help After You’ve Been Diagnosed with a Chronic Disease.
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