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The Kind of People You Need on Your Congenital Heart Disease Journey

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There are times in congenital heart disease (CHD) world when you have appointment after appointment, test after test, question after question (and many are not answered) – and you just start to keep these things to yourself. It’s not because you don’t care to share it with friends and family, and even immediate family sometimes, but it’s just that you can’t bear to see the worry, the panic, the concern creep across another face another time. You suddenly feel like you are not only dealing with your own worry and emotions, but now you have to reassure, comfort, and explain to everyone else.

I fall into this all the time. You get tired of the judgments because you want to live life, but others think you shouldn’t. You get tired of the questions that you wish you knew answers to first. You don’t want to explain this test thing again because it’s almost too complicated for you to even understand. You no longer share with everyone that you are heading to the ER, again, because of some funky feeling in your chest that usually ends up being digestive issues or a medication adjustment. You don’t know how to tell yet another person that somehow your heart function is destroying the rest of your body, like your liver, so you stop talking about it. You stop talking about all of it. You quit telling people you have tests. You stop sharing that you are going to another specialist for yet another part of your body that your crappy circulation caused. You stop sharing your own feelings because you just don’t want to deal with others’ feelings caused by you.

I think this is why I fall into the extreme loneliness of my disease. While others are completely at liberty to have feelings, opinions, and questions about this messy road, it gets tiring. And while it’s not supposed to be my responsibility to care for those feelings, it’s overwhelming because I feel I caused those feelings. However, if you’re in this CHD boat with me, you know you need a support system. I learn to keep it basic, and keep it to trusted, healthy people in my life. By healthy, I mean they know how to handle their own emotions. They can express worry, but they know that they can’t dump it on me. They are allowed to offer advice and opinions, but they also understand that I can leave those behind if I decide it’s not best for my situation. They understand that they won’t understand, and that’s OK. I find people who treat me like a person. A person who doesn’t want to project pity every time I’m with them, or even to acknowledge me as “sick.” I want to be a person who isn’t labeled or treated as weak, but still have the support system that doesn’t freak out when I need to just sit down. I have my certain list of prayer warriors that can just send up a request when I am heading to the ER, who won’t panic until they need to.

Just hear this advice – find your people. You need them. Don’t withhold the major things from your close family, but use your judgement on if they need to know every little ailment you face, because you have enough emotions and drama to deal with – and no one wants the helicopters of worry at every turn of the heart road.

If you have family that can deal with their own worry and know how to channel their emotions in such a way that it doesn’t eat at you, share it all. If you have family in your life whose worry is a constant stressor in your life, know that it isn’t your job to constantly deal with their feelings, just because they feel like they need to be all up in yours.

I would withhold from those who show up at your work to discuss your personal health stuff in front of your coworkers, or call every hour on an appointment day when they know you have an appointment that day, or the ones that tell your spouse how to tame you from living, or they express strongly that they “know” this drug, supplement, oil, or treatment is way better than what your doctor prescribed because of some article, commercial, website, or person told them it worked for them. I get it. They care. They worry. They want control over a life that you don’t even have control over, but it’s stressful. But care shouldn’t look that overwhelming.

Find the people who will simply be present if you need them. They will only offer advice that you ask for. They understand that they will never understand. Find your people. Your trusted, emotionally healthy people who can be stronger for you, rather than lean all of their worries on you.

Getty Image by fizkes

Originally published: June 10, 2018
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