When Friends Don’t Understand Your Invisible Illness: 4 Things to Do

When we are ill, it seems like friends don’t understand all the “stuff” that we deal with daily. But does that mean you let these friends fade away whenever they don’t quite understand? No. But you cannot keep setting yourself up for pain either.

By Lisa Copen

If you live with an invisible illness, you may find the emotions of coping with people’s doubts about your disease may 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.

Those with illness, however, have no ability to make others except the illness or even acknowledge it. When our loved ones are skeptical about the existence or theseriousness of our disease, it can be devastating. It can wound our self-worth and cause problems in our relationships–sometimes indefinitely.

So, how do you cope when someone you love and care about won’t acknowledge the significance of your disease –or even your illness at all?

When friends don’t understand what we deal with each day, where do you start to cope with those emotions you have?
Here are four steps:

1. Go with it.
Though the seriousness of your illness is significant under your roof, sadly enough it isn’t that important to others. And there’s no magical conversation you can have with the person that will make him change his mind. The most likely way your friend will accept that your illness is real, is by observing you. For example, your invisible illness may begin to have some visible side effects. When he sees you struggle to get up out of a chair, don’t comment; just let him take it all in. Those visible side effects may never occur, unfortunately, which means you must remember you cannot make someone change his or her mind.

2. Grow with it.
Use this as a time to reflect on your own perceptions of people. When you are standing in line at the store and become irritated because “Surely no one here knows how hard it is just for me to stand!” think twice. Nearly 1 in 2 people in the USA have a chronic illness and about 96% of it is invisible, so the odds are that someone in line likely is experiencing the same chronic pain and fatigue.

Also, what situations are your friends experiencing that you don’t understand? A child with a disability, the affair of a spouse, the loss of a job—all are life-altering and the odds are that your friends could use your empathy and support during this time. perhaps you and your friends don’t understand what one of you is going through at all. Use this to your advantage–understanding that you need to give her a call and just listen.

3. Get over it.
Don’t obsess over the fact that no one knows what your daily life is like. It is so easy to do! We would all like those people who are closest to us to be able to slip inside are skin for just twenty-four hours, but that level of understanding will never occur. Don’t allow your resentment of this fact taint your relationships. And don’t take it personally, despite how personal it feels.

It is not your job to change someone’s mind. You only have control over your own behavior so make sure you can be proud of how you handle the conversations. Wanting to yell, “I wish I could give you this illness so you would finally understand how much it hurts!” may be the natural response to a situation, but a conversation without anger later on will do more for your relationship. Avoid lashing out just because friends don’t understand. You may regret it later.

4. Get on with it.
Life is short and good friends and family are precious. The level of intimacy in your relationship will not be as deep as it could be if your loved one acknowledged your invisible illness, but the relationship can still exist if you want it to and it’s otherwise a healthy relationship and not destructive.

Plus, chances are that your friend will encounter a health setback at some point in his life. Few people get through life without a health complication at some point. She will have a glimpse into what you have been experiencing and he may even seek you out for advice. Rather than saying, “Well, that is not nearly as bad as what I deal with every day!” give your support and encouragement generously and avoid saying, “I told you so.” Be kind in giving grace.

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, perhaps. Accept her for what she 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 and she may become one of your most outspoken advocates and cheerleaders.

Lisa Copen is the founder of Rest Ministries and she lives in San Diego with her husband and son. She is gradually learning how to balance motherhood, family, illness, and ministry, but she still knows it will be a lifetime lesson. You can see the books she has written, including, Why Can’t I Make People Understand? at the Rest Ministries shop.