Dealing with IPF? Be Kind to Yourself!

I recently lost a family member to idiopathic pulmonary fibrosis (IPF). She’d lived well with IPF for several years and physically well until the last six months. As you might imagine, it’s been incredibly difficult for me and my family, but the grief we’ve felt didn’t happen after her death; it started after her diagnosis…

Grief is an intense emotion, a tsunami of such overwhelming force that it can permanently destroy lives—if we don’t deal with it and get support. But based on my own personal (and very current) experiences, I believe grief (grieving well) also has the power to heal.

But when it’s not processed, it can be like a scab that forms over an infected cut, the slightest touch makes you wince; oozing, yellow pus rises to the edge of the wound. If not treated it can become systemic and lead to death. You know what I’m talking about?

Any medical professional would tell you that you that in order for the wound to heal, you’ve got to cut the scab (our protective emotional cover) off, dig in, and clean out the conflicted emotions that need to be channeled and expressed. So when I read an uplifting article written by a long-term family and marriage therapist who was forced to retire after a fulfilling 30-year career because she’d been diagnosed IPF, I latched on like a barnacle on a boat. It was so uplifting, I was compelled to read it twice.

She is amazingly powerful because she practices what she preaches and here are some helpful tips that I’d like to share:

You Can’t Just “Snap Out of It!”

  • Give yourself all the time you need to grieve
  • Grieving “well” doesn’t mean maintaining a smile and a positive outlook. That’s going to get you “infected”; it’s not healthy
  • Get your Kleenex, comfy chair, and favorite binky—or crawl into bed with your doggie and cry your ever-living guts out—often. Let the snot roll
  • When grief hits you when you’re washing dishes, stopped in traffic, or at the movies, it’s okay to let the tears flow
  • Don’t expect your family and or even dearest friends to understand what you’re going through. They, too, need time to grieve and deal with your IPF diagnosis. Eventually, most people will rebound to be of great support
  • Join an IPF live (or online) support group—most people find these very helpful
  • Work with a licensed professional counselor to help you identify what you’re feeling and how to process your feelings of sadness, anger, fear, and denial

Make Plans

  • When, and only when, you are ready, and after you’ve talked with your healthcare team, make a list of things you want to accomplish—short and long-term and then find a way to pursue them
  • Celebrate your successes—even if you don’t completely accomplish a goal 100%. Give yourself credit and move on to the next one
  • Consider taking a mindfulness class—it’s a great way to learn to live in the moment and has been shown to help fight off panic attacks, stress, and anxiety

Most of all, be gentle with yourself.

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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