It’s the first Saturday of the year, and I want to dedicate this post to the people who love me and are struggling to understand my new life.
When I became housebound with LVSD 20% and Stage IV heart failure last month, the change wasn't just physical for me—it was social for everyone around me. Friends often want to help, but they don't know how to interact with someone whose whole world has shrunk and whose life is constantly monitored by a Community Care Team.
If you are a friend, family member, or supporter of someone with severe chronic illness, here is a simple guide on how to connect with the grounded traveler:
1. Acknowledge the Limits, Not Just the Illness
Please understand that "I'm tired" when I have Stage IV heart failure is not the same as being tired after a long day. It means my heart is working at its absolute limit, and that an extra five minutes of talking could cost me a night's sleep or worse.
Rule of Thumb: Assume all my energy is going toward breathing, eating, and basic care. Any social interaction is a bonus that must be scheduled and kept brief (the 10-Minute Rule).
Best Connection Method: Short, asynchronous messages (text, email, quick voice notes). These allow me to respond when my energy allows, without the pressure of a live conversation.
2. The Best Gift is Practical, Non-Physical Help
I don't need things that require me to move or carry weight. Since the Community Care Team handles my basic medical needs and cooking, the best help is often external and light on my limited energy.
| The Old Gift (Unhelpful) | The New Gift (Invaluable) |
| A heavy book or complicated board game. | A short, thoughtful email or text. |
| A visit lasting more than 30 minutes. | Running a necessary errand (e.g., picking up a low-sodium specialty item). |
| Bringing prepared food (unless sodium content is verified). | Offering to sit on a video call in silence while I rest, just for company. |
3. Ask About the Life, Not Just the Disease
It's easy to fall into the trap of only talking about medications, breathlessness, and blood pressure. While those are my reality, I am still Raymond Duggan, the person who loved to travel.
Ask for my opinion: "Did you see that documentary about Japan? What did you think?"
Share your news: Tell me about your boring workday, the traffic, or the funny thing your pet did. Bring the outside world into my home base.
Don't say, "You need to fight this!" I am fighting every second. Instead, say, "I am so impressed by your discipline with your diet/meds." Validate the hard work I am already doing.
To my friends and family: Your patience and understanding are the most powerful forms of care I receive. Thank you for walking this unexpected, quiet path with me. Your presence is the true victory in this fight to live.
If you are supporting someone with a serious illness, what is the best piece of advice you’ve received about how to show up for them?
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