4 Tips for Communicating With Loved Ones

Editor's Note: This article originally appeared on our partner site RareDisease.net.

It can be so hard for people outside of the rare disease community to truly understand what we go through – ongoing symptoms, fatigue, never-ending appointments with specialists, continuously adjusting to an ever-changing “new normal,” and the list goes on and on.

Here are some things I’ve found helpful in navigating communication with loved ones:

1. Find a simple way to communicate when it’s a bad day

When I’m having a bad day, I don’t want to talk about it in agonizing detail. I’m often just trying to do my best to get through the day, and that takes up a lot of energy. Or I want to rest or need a bit more help with getting things done around the home.

My husband and I have discussed the spoon theory quite a bit. Spoon theory is a metaphor coined by Christine Miserandino that expresses how much energy individuals with chronic illnesses have available in relation to daily tasks.¹

If I’m struggling, I often tell my husband, “I have no spoons left. I don’t know how I’m going to get through the rest of the day.” He hugs me, encourages me to rest, and then helps pick up the slack with tasks at home.

2. Discuss types of communication that are not helpful

I think most people mean well in discussions about chronic illnesses, but what a loved one thinks is a good thing to say isn’t always helpful to the person with the medical condition – in fact, it could even be harmful.

I decided to have a discussion with a family member about why the "it could be worse" type of responses weren’t helpful for me and how it felt like it trivialized my pain (though I know that is not what they intended). This resulted in one of the most honest and touching conversations I’ve had with them, and I think the discussion helped both of us.

3. Ask for help when you need it

I had 5 surgeries to treat Graves’ disease and thyroid eye disease during the pandemic. The nerves and efforts to stay healthy leading up to each surgery were a lot to deal with; then afterward, I was very focused on recovery.

I asked my husband to please update our friends and family because answering every text and call explaining things over and over again was just so exhausting.

4. It’s okay to say you don’t want to talk about something

I think a lot of friends and casual acquaintances default to asking me about my medical conditions because they know my chronic illnesses are a prominent part of my life. I often hear a casual, “You still eat gluten-free?” (Yes, I have a medical condition that requires a gluten-free diet for life.) Or, “How are your eyes doing after surgery?” (The one from a year ago? Fine.)

Honestly, it can be exhausting, and my experiences with my eye condition were incredibly traumatic. I think it’s more than okay to say, "I'm fine, but honestly, I'd rather talk about something else," then politely change the subject.

I am more than my medical conditions, and I’m not required to recall my emotional trauma during casual conversations.

What tips do you have for communicating with loved ones? Share with our community in the comment section below.