November 17, 2022
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People in your life will have their own attitudes about your illness. You don’t have to let them affect yours.
Welcome to Mindset Matters — a space to learn about the mental and emotional aspects of living with chronic illness. Mindset Matters is led by Nat Kelley, a certified life and mindset coach, and founder of Plenty and Well. For Nat, mindset work was the missing puzzle piece in her journey navigating ulcerative colitis, and she’s passionate about helping empower others in their journeys.
I’ve been living with ulcerative colitis for 5.5 years now. For 4 of those years, I’ve been a certified mindset coach working with chronically ill folks. In that timespan, I’ve picked up a few reminders that always seem to give me (and my clients) a boost when we start feeling bad about living with chronic illness. Here are my top 10.
You are not a burden for having more or different needs than other people. You are not a burden for canceling plans. You are not a burden for asking the waiter to remove ingredients from your order. You are not a burden for having to ask a friend to drive you to your appointment.
Something that helps me with reducing these burden feelings is swapping apologies for gratitude. So, instead of saying to the waiter, “I’m sorry for being difficult,” say, “Thank you for being patient with my order.” Or when canceling plans, instead of saying, “I’m sorry I always cancel,” say, “Thank you for always understanding when I have to cancel because of my health.”
If someone treats your illness as a burden, as an annoyance, or as something “weird,” remember that it isn’t a representation of your illness, your journey, or yourself. It’s a reflection of that person, and it shows that they most likely don’t have the empathy, maturity, or emotional capacity to be a respectful and supportive part of your life.
It’s easy, once we get diagnosed with a chronic illness, to buy into a mindset of, “I’ll take what I can get” when it comes to relationships with friends or partners. But let me tell you: You are still worthy of incredible, loving, loyal friendships and partnerships, even with chronic illness.
We may begin to think that no one will want to be our friend or romantic partner, so we might as well settle for anyone who will put up with our illness. But by hanging onto people who don’t truly support us, love us, or treat us well, we’re not leaving room for the right people to come into our lives.
Grieving our past selves can feel really lonely and uncomfortable because we haven’t lost a tangible person in the same way we have when someone dies. But the grief you feel over losing aspects of your previous self — lost hobbies, jobs, characteristics, passions, etc. — is so incredibly valid. Take time to make peace with that past self and then continue getting to know who you are now.
When others don’t understand what we’re going through, they may dismiss our feelings. Worse, they may suggest that the sadness, grief, or frustration we feel with our bodies, illnesses, and symptoms is overly dramatic or annoying. But know that all your feelings are very real and valid.
Only you can know how it feels to exist in your chronically ill body. Take time to sit with and acknowledge your feelings, whatever they may be, while also taking time to insert joy and self-love into your life.
Instead of lowering your standards for friends and partners because of that “I’ll take what I can get” mindset, learn to use your illness as a filter that allows you to raise your standards.
Once I was diagnosed with ulcerative colitis, I realized I actually needed friends and a partner who are more empathetic, more mature, more caring, and more understanding. I also deserved those qualities in the people I surrounded myself with. Learn to be OK with letting go of people who aren’t a good fit for your journey and get clear on the type of people you want to call in instead. Writing out a list of qualities you’re looking for in both platonic and romantic relationships is a helpful way to remind yourself of what you’re worth.
Think of your doctor as someone you’ve hired. What can you do with people you’ve hired? Yup, you can fire them! If a doctor is invalidating you, gaslighting you, or not putting in enough effort to find answers for you or get you the help you need, fire them and find another doctor who will. The search for a new doctor is never fun, but it’s so worth it to get the care you deserve. Just be sure to have a new doctor in place before you fire your existing one because it’s never a good idea to be without proper healthcare.
Raise your hand if you’ve ever felt embarrassed in any of these situations:
Embarrassment is a natural human emotion, and we probably can’t truly banish it when we face these or similar scenarios. But we can find ways to manage our embarrassment and not let it stop us from doing what we need to do to honor our bodies. When I notice embarrassment arising, I repeat to myself: “Honoring my body comes before keeping my embarrassment comfortable.”
The more times you push through embarrassment to do things to honor your body, the easier it becomes, especially once you start to notice that even when you do feel embarrassed, nothing truly horrible happens when you take the actions that keep you healthy.
Asking someone to get groceries for you, help you with household chores or drive you to an appointment isn’t a sign of weakness; it’s a sign that you know your body’s needs and boundaries and are doing a good job of honoring them — and that’s something to be proud of!
Allowing our friends and family to support us by tangibly helping us in ways that we need is such a beautiful way to:
Because chronic illness takes away certain aspects of our independence, it’s easy to stubbornly hold onto every shred of independence we still do have. But ask yourself, is it worth it to hold onto that independence if you’re completely exhausted afterward?
Our illnesses play huge roles in our lives and will continue to do so, but we are also more than the diagnosis or diagnoses we were given.
Remember to take time to find out who you are outside of your illness and foster the growth of that person. Maybe this means learning something new or trying a new hobby that’s compatible with your chronic illness. Maybe this means spending more time in your own company or doing activities like journaling and meditation to really sit with yourself. Whatever it looks like for you, don’t forget that you’re worthy of fostering joy, hobbies, and passions in your life, even if they look different than your pre-illness joy, hobbies, and passions did.
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