Support is something that, for me, has evolved over time. Sometimes it comes from different people. Sometimes it comes from my dog. Sometimes it comes in the form of a large order of McDonald’s fries. Regardless of its source, the most important thing is that it’s something that is continuous.
When my partner was informed that she had cystic fibrosis, I remembered thinking, “OK, but what is that?” That was followed by arguably the most impactful Google search I’ve had to date. The initial months that followed the diagnosis were tough — for a lot of reasons, but especially because of the heavy weight it forced on someone that I love. Realizing that you can’t relieve someone of their physical pain is tough to process. Saying encouraging words to my partner when she’s unwell can sometimes fall flat. And I can’t blame her. Words don’t increase lung function or magically replace the hours of her life that she has to spend doing her daily breathing treatments. Sometimes words are as useful as snake oil. But I’ll take words over silence any day.
Some of the things that I do to try and keep myself centered will vary from day to day. Sometimes I sing or hum a song. Other days I’m asked to stop humming. Getting a workout in, playing basketball, or running are all physical things that I enjoy and things that have proven helpful to me. But just as important as physical support is, ensuring that I am emotionally healthy is vital as well.
Trying not to get inside of my head becomes easier when I remind myself that I’m not the one with CF. This reminder is always a solid way to shut down a pity party prematurely.
Although online CF support can be amazing and immensely supportive, it can oftentimes be difficult to find information tailored to partners. So, here are some things that have helped me:
- I would strongly recommend doing the small things: cleaning dirty dishes, making MiraLAX® (I like to think of myself as a specialized mixologist at this point), having treatments ready to go, ordering medicines, and meal prepping. But don’t just do the small things, give yourself a high-five, and then circle back the next month.
- Motivate yourself to develop helpful habits and then integrate them into your routine so that they end up being a part of your daily regimen. I am in no way perfect with this, but it’s something that I’ve worked on and it’s noticeable how much of a difference this can make for your partner.
- With all the things that CF demands, don’t lose sight that your partner is defined by so much more than his or her disease.
Nothing that I’ve listed is earth-shattering. Is it tiresome and unsexy? Sure. But it keeps me occupied, and it puts less stress on my partner’s life. With so few things that I can control, I try my hardest to put more effort into the small — some may say menial — things that I can control. As the famous psychiatrist Carl Jung once said, “Even a happy life cannot be without a measure of darkness.” I’m just working on keeping that measure low. Hopefully, you too can find what works for you and run with it. Then, you can give yourself an occasional high-five.
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