When Friends Don’t Understand Your Invisible Illness: What to Do


by Lisa Copen

If you live with an invisible illness, you may find the emotions of coping with people’s doubts about it can be harder to manage than the disease itself. Most of us with a chronic illness must eventually accept our condition. In order to live our best life, we need to educate ourselves about the disease and make well-researched decisions about treatment.

But we have no control over our loved ones when they choose not to accept our illness, or sometimes even acknowledge it. Their skepticism can last a lifetime and damage our self-worth and many relationships.

So, what you do when someone important in your life refuses to acknowledge the seriousness of your disease, or accept that the disease even exists? Here are four steps to change your actions and attitudes:

1. Go with it. Your life feels very serious right now, but don’t take your situation too seriously when around your friend. Unfortunately there is not a magical talk you can have that will make him instantly change his mind about your health situation. Most likely, the only way for him to rethink his perception of your illness is for him to observe you and your typical activities. Though your illness may be invisible, he may start to witness some visible symptoms. Perhaps you may have some new limitations, like being unable to walk a long distance; and rather than explaining what you can and cannot do, he might just see it.

2. Grow with it. This situation can be a perfect time to reflect on your own perceptions of people. Have you ever stood in line at the bank and thought yourself, “No one here understands how difficult it is to just stand in this slow line!” But nearly 1 in two people in the USA have a chronic illness, so the chances are high that someone standing beside you does understand. Remember that 96% of illnesses are invisible, so watch your assumptions. What situations are your friends going through that you don’t fully grasp? The affair of a spouse, a baby born with a disability, and the loss of a job, are all experiences that can alter one’s life in an instant. Chances are that your friends can use your support and even empathy.

3. Get over it. You may find yourself thinking “No one understands!” so frequently that you are missing out on new friendships. Save yourself the grief and don’t obsess over how much people sympathize or if they do it appropriately. Though we would all like a loved one to be able to experience what it would be like to slip inside our skin for twenty-four hours, it’s never going to happen. If people around you feel like they can never please you, soon you won’t have any relationships left. You cannot change how someone else thinks; you only have control over your own behavior. So make sure your conversations are full of grace.

4. Get on with it. No material things in this world can replace relationships you have. If a loved one doesn’t acknowledge your illness, it’s true that the depth of your friendship will never be what it could be. But if the relationship is healthy in other ways, and one worth saving, you can keep it.

The odds are that in time your friend will eventually have his own health crisis, and have some level of understanding about what you have faced on a daily basis. He may even turn to you for advice. Be supportive and encouraging. Don’t say “I told you so.”

Go with it. Grow with it. Get over it. Get on with it.

Is it possible to have relationships with people who don’t understand the seriousness of your illness? Yes. Accept him for what he is able to give, and know when to back off if the relationship becomes destructive to your emotional state. Have reasonable expectations. In time, this may end up being one of your closest friendships.

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