Health & Parenting, Home & Happiness

November 7, 2016

Support and Balance While Living with a Chronic Illness

This week during a walk with my dog I started thinking about how lucky I am to be feeling well. I remembered my last hospital stay where everything bottled up came flying at me. It's tough realizing I can't do everything on my own, and that I might need help, but there comes a time when everyone is going to need help.

I realized that even though I am trying and doing more than I have before, it isn't always enough and unless I'm doing enough, things will return to the way they were. As frustrating as that is, there's something humbling about knowing that I could always be doing better, because then I know it can get better. I'm hard on myself when it comes to making mistakes, but when that voice pops into my head that tells me I'm not good enough or I'm a failure, I use it to motivate myself and prove it wrong, instead of listening to it and giving up.

I think there's a difference between doing something and consciously deciding to do something. Yeah, you might go for a walk, but it really matters once you decide to go for that walk. Yeah, you might do a treatment, but it really matters once you decide to do that treatment. We are gifted with the power of choice. As adults, we have the power to make a lot of choices from what we wear, and whether or not we exercise, to whether we want to clean and run errands or binge watch Netflix all day instead.

The most difficult challenges I face right now are time management, support, and balance. I forever feel like a hamster on a wheel trying to keep up instead of running with the wheel. It's important to remember that humans make mistakes and we'll never be perfect. We might never run with the wheel but the best thing we can do is try. The great news is we're forever evolving and learning how to adapt to new circumstances and situations.

Willpower is paramount and support is crucial. From our time on the Earth as infants to becoming senior citizens, as much as we desire to be independent at times, we will always need support. Everybody needs a somebody. Be that somebody.

During my walk I realized how important it was to me just to have a hug and hear "it'll be okay" but also to start discussing my biggest hopes, dreams, and fears out loud. I knew I needed it, but not until it happened did I realize how much I needed it. 

Support is a difficult issue because a lot of people might be embarrassed or don't know how to ask for help. Many people feel like a burden if they ask for help. I think it's especially true that teenagers and young adults want independence, so we might be more reluctant to ask for help or accept help when we feel like we should be able to do certain things on our own. It's a delicate balance and requires open communication, so if you're a family that doesn't talk, it's going to be even harder. I think one of the biggest issues parents of children with chronic illness face is not knowing how to fully support them. It's hard when you want to help but don't know how.

I know that a lot of parents see that their kids aren't eating enough, or aren't being as compliant as they could be and they want to help, but might not know how. You might want to yell at them or force them to do their treatments, but that leads to resentment and strain on your relationship. I think it's important to set up boundaries and have some structure there but ultimately you want to teach your kids what's important and let them be a part of the decision-making process. Empowering kids makes it feel like this isn't something that just happens to them and that can make it a more positive/less combative experience for everyone. I think no matter what, it's important to communicate and to allow that open channel of communication and free expression.

My parents would push me to do my treatments or try to force me to eat "just a few more bites" because they knew what I needed medically, but it just created a hostile environment and made me dread eating and treatments. Eventually, they got tired of fighting with me and kind of let me do my own thing, but I still needed someone to hold me accountable, it just needed to be a balance. In a perfect world, we would all understand how to help each other but unfortunately, we don't. Whether it's asking your kid what their goals are or helping sterilize nebs, or even setting up a special treat or extra playtime for doing so many treatments a week... etc support can be as simple as just being there. You're allowed to make mistakes, you're human, but whatever you do, keep reacting, keep talking, and don't shut down.


These past few months I was in that place where I didn't feel like I had control over cf anymore and I didn't know how to ask for help, because I didn't think it was possible for things to be different. I had sat around with the feeling for so long that things would never change and this is how life will be. I didn't realize that I was letting cf drive my life and I was sitting in the passenger seat self-destructing. Once I started seeing that other people like me were still taking control of their life I started to realize that I'm still here. I see now that I've always been here, and as long as I am here, I can either ride in the passenger seat, or I can get behind the wheel.

I want to thank my friends for helping me realize that I'm capable of doing this. I've had a lot of doubts and uncertainty over the past few months and years and I needed the reassurance and belief in myself to get back on track. There's always been a little spark in me but to have that spark further ignited means the world. I feel like this is the most intense, scary, and enlightening part of my life because my eyes are open to things I could never see before and I'm being honest not only with myself but being able to say those things out loud. Uncertainty exists in everyone and it's okay.

Whether it's a hug, a few words, or simply just being there I wanted to just say thank you and that you've helped me. I have a lot of work to do but every time I start slipping, I remember what you've said or done and it helps me.

Thank you for being my somebody.

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