Gary McClain, PhD, is a therapist, patient advocate, and writer who specializes in helping clients—as well as their family members and professional caregivers—deal with the emotional impact of chronic and life-threatening illnesses.

“He/she just doesn’t get what I’m dealing with.”

I hear this a lot from my clients, and Connect community members often express the same frustration. Their partners seem not to care they are suffering. Or their partners may have made it clear they don’t want to hear about how they are feeling: “Stop complaining.”

They may listen, at least temporarily, and then change the subject: “Yeah, yeah, now what about…” Even worse, some tell them it is “all in their head.” Or accuse them of faking how they feel to get attention: “Stop being dramatic.” Their partners are impatient and unhelpful when what they need is their understanding.

“My partner doesn’t understand. And won’t even try.”

When Others Don't Understand

When I first started counseling clients living with chronic illness, one of my clients taught me a valuable lesson.

She described her day-to-day experiences, the good days and bad days, how it affected her relationships, her frustrations with her treatment, and the adjustments she and her family were making.

“I can imagine what that must be like,” I said to her.

My client thought for a moment, and then she responded:

“I don’t know if you really can. I don’t know if anybody can who’s not living with this condition.”

“Maybe you can help me,” I answered.

My client’s experience reminded me of how lonely the road can be for those who are living with chronic conditions. But her story also left me thinking a lot about what it means to “get” what someone else is going through, and what it means to understand someone else’s suffering, to walk that road with them.

Some of my clients are fortunate enough to have partners who try to understand how they are thinking and feeling, who are able to listen, to offer comfort, and even to anticipate what they need. That’s called empathy.

The harsh reality is that others need some extra help. Or just don’t have what it takes. Or won’t try.

Sad and unfair as it is, people who are loving and caring in so many ways often seem to shut down when their loved needs to talk about their chronic condition, or when they need emotional support. While they may pick up the slack in household chores, or offer other assistance, the support may begin and end there. Or they may not be so helpful there, either.

What’s going on at your house?

So often my clients describe how their communication with their family members begins and ends with “you just don’t understand.” When a partner hears these words, it can feel like an accusation. Consequently, they may not be sure what to say to defend themselves, or wonder if they should have to. The result is frustration, guilt, anger… not the best route toward better communication, or understanding, for that matter.

Lack of understanding… frustration and disappointment… the walls go up.

Finding Support and Empathy

Here are some ideas that might help bring those walls down:

Take a look at your expectations. What I have learned from clients, and in my own experiences in life, is that people can only give as much as they can give. And that includes being understanding and compassionate. But accepting that other people may be limited is another step toward accepting life on life’s terms. As is accepting that there may be only so much another person can or will understand about what it’s like to live with your condition. So the starting place is to decide not to beat your head against what feels like a pretty think wall.

Not “getting” your chronic condition doesn’t mean you aren’t loved. While it may feel like the other person is withholding their support, or being outright insensitive, it may be the best they can do, at least at this moment. While it hurts a lot to not feel like your partner doesn’t understand your pain, try not to jump to conclusions about whether you are cared for or loved. Remind yourself that you can’t read your partner’s mind.

Helplessness can lead to avoidance. Friends and family members may be telling themselves that, if their loved one is in need, then they should be able to somehow “fix” it for them. So when faced with helpless feelings, their reaction may be to run away. Or to pretend whatever it is they can’t make go away doesn’t actually exist. That’s denial. Or they may be afraid of the future, but not want to admit to themselves, or to you, that they are afraid. Your family members may be suffering, too, and not be able to express how they feel.

Ask yourself: Am I doing my part to encourage communication? This is a question that might be hard to answer. It all goes back to your idea of the way things should be. In a perfect world, your partner should get you, and that means getting your chronic condition. But since they don’t, it may be up to you to see where you can help to at least talk about that wall, if not start to break it down.

Here are some conversation starters:

  • “What I need most a listening ear, that when you talk about how you feel you don’t expect them to do anything about it.”

  • “When I need you to do something for me, I will ask.”

  • “I just need to know you care. Will you ask me how I am doing?”

  • “I know this is hard for you, too. What can I do to help you?”

The key is to talk, so do what you can to get the conversation started. Yes, I know you shouldn’t have to. But it’s worth a try. Or a few tries.

Don’t let yourself fall into the victim mentality… If you focus on what you don’t have, including the understanding of people who are in avoidance mode, then you place yourself at risk for falling into a hopeless place yourself. Take stock of what’s going well in your life, starting with your own inner resources. Decide to see possibilities.

And don’t let anyone tell you that you are the one with the problem. The burden of proof here is not with you. If people you care about can’t and won’t understand what you are living with, so be it. But refuse to allow them to tell you that the problem is all yours, that you are “giving up,” or “too needy,” or that you “need to get over it.” So let me add: some of us are thinkers, some of us are feelers, some of us will do anything to avoid uncomfortable feelings. It’s their problem. A shame, right?

Stay hopeful. Accepting other people’s limitations frees you up to put your energy into what’s possible. So start where they are instead of where you want them to be. It may take time, and patience, and a lot of encouragement – from you – to help the people in your life to be more understanding. You may not see the progress you want, but to “fight fire with fire” – and respond to their lack of understanding by putting up your own wall – is only going to result in a thicker wall at a time when you all need each other. Communication works both ways. And so does compassion.

Show, and tell. Educating your partner about your chronic condition may be an ongoing process. He/she may need some consistent help from you in understanding your condition and how it affects your life. Over time, you may be help your partner to gain a realistic perspective on what your chronic condition means for your life, and your life together, and not simply as a “catastrophe.” Knowledge is power.

Remember that you are not alone. In a perfect world, the people who are closest to you, should also be the most supportive. They should do everything humanly possible, and beyond, to understand what you are going through, and be there every step of the way. Yes, they should. But if they can’t, then are there other people who can?

Look around for people in your life who can and will make an emotional connection with you. Including all of the understanding friends you have right here. We are here for you, so keep us posted! You are not alone!