Reaching Out to Immunocompromised Loved Ones: The Questions We WANT to Hear

Right now, we all have someone we feel worried about.  At least one person in our lives who is at higher risk from COVID-19. Yet worrying doesn’t necessarily lead to reaching out.  We may feel awkward or unsure of how to ask how things are going.  Being raised in a society that teaches us to avoid talking about differences, disability, age, health status… Bridging that discomfort doesn’t suddenly go away because of a pandemic.

Even when there’s not a health crisis, reaching out to loved ones who are sick or struggling is not easy.  On page 38 of Ilana Jacqueline’s book, Surviving and Thriving With an Invisible Chronic Illness, therapist Dawn Wiggins shares this insight:

“In my experience, most loved ones just want to solve the problem.  When families don’t understand the illness and when medical science has a difficult time understanding and treating that condition, it leads to a feeling of powerlessness.  Powerlessness is such a strong and uncomfortable feeling that many will do anything they can to avoid it.” 

Loving someone through illness is heartbreaking.  When that illness is either life-threatening or chronic (or both!), it heightens all of the emotions involved until we start to pull away or pretend the illness doesn’t exist.  This does not mean we don’t care!  In fact, for many of us the more we care, the more painful it feels, and the more lost we can get.  The best way I know to get through being lost is to map it out!  

So, if you find yourself wanting to reach out and at a loss for what to say, here are some things to keep in mind:

Questions that have lost their meaning

When someone asks “How are you?” how do you respond?  Odds are, you completely ignore how you’re feeling in that moment and dish out an auto-reply like “Good!  And you?”

If you are asking someone with chronic illness how they are, and you want an honest answer, don’t go with such a generic question.  We learn, over time, that most people don’t really want an honest report when they ask that question.  We learn to say “fine” even when what we feel is “absolutely horrible but I’m pushing through.”  So, when you’re just looking for a greeting, stick with “how are you?” but when you want to give your Friend in the Fight an opening to actually share how they are, switch it up.  Even minor tweaks like “How are you doing these days?” or “how are you feeling?” can elicit a very different answer.  I also appreciate when people ask “Are you doing ok?” because it gives me permission to say no.  Grounding the question in the here-and-now can also be a good way to tap into mindfulness and wanting to be present in their experience.  For example, “how are you feeling today?” 

You can also get specific — “How is your head feeling today?”  “Has your fatigue been any better this week?”  “Did the new medication help at all?”  This does many things at once — it shows you want a real honest answer, it shows you care enough to remember what issues were happening before, and sets a limit on the conversation.  You may not honestly have the energy to hear their answer to “how are you really?” and, frankly, they may not be up for it either.  But checking in about one small piece of the puzzle can be a good midpoint.

Perhaps the most important aspect of this is to be ok with however they answer.  You don’t need to fix it.  You shouldn’t expect to feel comfortable.  Live with the discomfort and show you’re there to listen, even when it hurts.  If you find yourself wanting to pull away or avoid the topic, consider telling them the truth.  You can say that you feel sad or powerless, and you want them to know that you still really care, you just don’t know what to say.

Offering Help

If you’re feeling powerless, offering to help may actually make your relationship feel less fatigued!  It’s important to not assume you know what would help them — I can’t tell you how many people have told me to try yoga or cut out gluten.  Start by asking, “Is there anything I can do to help?”  The longer you have these honest conversations, the more you’ll learn what they really need.  You can switch from “what can I do?” to “Can I help you with _______?”  For example, right now getting groceries is very scary for those of us with chronic illnesses.  Offering to get someone’s groceries or deliver toilet paper is a tremendous relief and act of love.

**It is also important to keep up boundaries so that you don’t burn yourself out.  Take stock of what you can do, and offer within those parameters.

The Simple Reach Out

Sometimes we don’t want to go into it all.  If you notice yourself getting overwhelmed or that your loved one seems tired of talking about it all, that doesn’t mean you should stop reaching out.   You can just send a simple message like “Hey!  Thinking of you.  Hope you’re doing ok <3.”  This quick hello can make a world of difference.  It makes us feel loved, safe, and supported.  It’s a reminder that we’re not in this alone.   

Are you an ally or caregiver who would like to know more about how to support those you love through illness?  Join our Friends in the Fight facebook page!