Living with An Illness That is Invisible: Getting Past Misconceptions

Living with an illness that few people can visible see can cause assumptions and frustrations among our relationships. How can we change this?

living with an illness

“You look so good! You can’t be as bad as you say. You look perfectly healthy.” “You think you have fatigue? Try working full-time plus having four children! Then you’ll know what chronic fatigue is.” “I think you’re spending too much time thinking about how you feel. You need to just get out more.” “If you really wanted to get well, you’d at least try that juice drink I gave you last week. It won’t hurt to try it.”

And the comments go on. . . and on.

And it really hurts.

You may be surprised to hear that nearly 1 in 2 Americans has a chronic illness or physical condition that impacts their daily life. They are living with an illness that may include everything from migraines to diabetes, back pain to fibromyalgia, and arthritis to cancer. One of the largest emotional obstacles for people who suffer from illness is coping with the invisibility of the pain and feeling like no one understands what they deal with on a daily basis.

And they are justified in these feelings, as about 96% of illness is invisible, meaning the person who suffers from the chronic condition show no outward signs of physical pain or disability. An assistive device is not needed like a walker or wheelchair. But the incredible pain one experiences each day can be disabling within the confines of the home.

If you have an invisible illness here are 5 tools to help let go of some of the frustrations:

[1] Free people from the expectations you typically have had of them.

This step will likely be a life-long process, but without taking it, you will consistently find that people will always disappoint you. No one is perfect–even you! And it’s important to remember that those living with an illness may not understand the difficulties that our friends are going through, such as a divorce, the death of a loved one, an ill child, a loss job, etc. Like these events, your illness is momentous in your life. And even though people do care, they still will have significant things going on in their own lives. Don’t hold that against them.

[2] Find supportive, caring friends for your journey of living with an illness.

If there is someone in your circle of friendships who is constantly belittling you or distrustful about your illness, this should be a relationship to end. If it’s a relative, distance yourself as much as you can. Illness gives us an opportunity to help us prioritize our friendships. With limited energies we should surround ourselves with those who at least can give us the benefit of the doubt and acknowledge our illness exists.

[3] Search for the joy in your blessings–despite living with an illness.

Instead of dwelling on thinking about how badly you feel, find ways to bring more joy into your life, even if it’s just appreciating the small things. Explore what makes you happy and what you are doing when a natural adrenaline takes over and you have extra energy. That’s likely where your passions are! Focus on bringing more of this into your life. And don’t let your limitations stop you.

For example, maybe you once loved to garden. Now you could grow a few potted flowers or hire a neighborhood teenager to plant some vegetables and set up an automatic sprinkler system for them. You could even start a garden consulting business.

[4] Use your aptitude and talent for things you have a personal interest in.

Too often, when we are living with an illness we begin to feel like the skills we learned in the workplace are no longer valuable. Perhaps you’ve always wanted to write children’s books or be a business consultant. Get involved in your community and do some volunteer or part-time work to continue to grow professionally. Rather than focusing on what others aren’t doing to comfort you, follow your dreams and give that gift of comfort to yourself.

[5] Be a mentor for someone else who is living with an illness.

You know what it is like to be living with an illness and to feel like no one understands what you are experiencing, so take time to be vulnerable with someone else who is going through this. Whether you meet someone through an online group such as National Invisible Chronic Illness Awareness Week’s Facebook Page, or through your local support group, volunteer your time and expertise (yes, you’re an expert on living with invisible illness!) and use it to make someone else’s journey simpler.

* You’ll find your own journey is more enjoyable too. For example, if you are frustrated that no one at your church thinks your invisible illness is real, rather than stop going to church, find ways to educate them, such as a column in the church newsletter or bookmarks about how to reach out to a hurting friend.

We can’t change other people–but we can educate them and give gentle advice about how many people are currently living with an illness–many of the illnesses invisible. Then we much work on ourselves. You’ll find that even when you want to change it can be difficult. It requires discipline and motivation for a better life. You owe it to yourself and finding joy in your life despite invisible chronic pain will improve both your mental and physical health.

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.

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11 Responses to Living with An Illness That is Invisible: Getting Past Misconceptions

  1. My biggest struggle for the most part is people not understanding the kind of pain I experience on an every day, never stops basis. Does anybody get the same as me, Like, if I was in so much pain I would be complaining more. I feel like if I chose to “complain all the time” I would, I think, make myself feel worse.

  2. I feel the same as you. Why complain all the time…. it’s not going to make me feel any better and it makes me look like I seeking sympathy. I don’t want sympathy, I want understanding.

  3. My experience has been that the assumptions are even worse when the husband is ill. Husbands are expected, Biblically, to support the family. When an invisible illness strikes, it is very hard for church family to be understanding. I have heard personally all the lines above plus much worse. We need a boatload of forgiveness for our brethren as Christ teaches us. Also, we need to remember that we are also undeserving recipients of Christ’s mercy and forgiveness.

    • christine, you make a great point about men with illness. We do have some great men here at RM and I always appreciate when they are willing to write for us or be interviewed. We need to hear their voice more!

  4. does tool #1 have a “typo”? ” And it’s important to remember that those living with an illness do not understand the difficulties that our friends are going through, such as a divorce, the death of a loved one, an ill child, a loss job, etc ” We all go through those things and more, as well as being ill…..

    • Thanks, Sue. it isn’t a typo per se. although those of us with illness do go through other challenges (divorce, loss of,job, etc.) my intent was to remind the average ill person–who feels everyone should understand exactly what they are going through–may NOT actually understand some of the other difficulties friends are going through. As you point out, they MAY, of they have gone through it, But they may not. No one scan truly understand it all, because even if we have the same circumstances, every one of our our experiences will be unique to us. Does that make sense?

  5. I have lost my job because of my illness and I have really been down and upset by this, so I decided last week to see if I could do volunteer work and have been shocked by how positive the responses to me have been. I know I need to do this and see if I can cope with this. I do feel I have much to offer and much to learn, praying that it goes well.

  6. Hello,
    I live in the UK. I found the Web-Site Living with an Invisible Illness so very enlightening!
    I honestly felt that only myself suffered with these feelings of isolation & failure due to my invisible illnesses. Just reading about other peoples similar experiences in coping with the same negativity surrounding their lifes has made me realise I am not suffering alone, thank God!. I,m not alone I can,t believe it!

  7. I came to the conclusion at the beginning of my illness, that I need to do my best to control my emotions and smile….when you get the flu, or a cold, you have the tendency to be cranky, but with a chronic illness, that is a luxury you cannot afford. So when people ask, “if you feel so bad why are you smiling?” I just tell them it is a choice I made, not to allow this illness to steal my joy. I just kind of figure the average person is not going to understand how extreme the pain I deal with is, so at least they are more comfortable around me, if not understanding.

  8. This is such a hard part of living with a chronic illness. The longer I’ve been sick, the better that I’ve understood that there are a lot of people who truly do care, but just can’t understand until they’ve been through it themselves. Thinking of it that way helps me get through it.

  9. Oh my goodness! Incredible article dude! Thank you, However I am going through troubles with your RSS.
    I don’t know the reason why I cannot subscribe to it. Is there
    anybody getting identical RSS issues? Anybody
    who knows the answer can you kindly respond? Thanks!!

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