Explaining Chronic Illness to Healthy People

October 2, 2017

A “normal” person might imagine that having a chronic illness is kind of like having a perpetual stomach bug or flu. I don’t blame them. It’s only natural for us to use our own experiences to try to understand another human being’s experiences. It makes a lot of sense to take the memory of a short-term illness and multiply it by several years to try to put yourself in a chronically ill person’s shoes.

I think people who do this can understand chronic illness sufferers a lot better than those who don’t even try, but there are a lot of ways in which this idea breaks down and can even cause problems.

For one, a short-term illness can sometimes be a welcome break from life and responsibility. It can be nice to have a valid excuse to miss school or work. It can be nice to have others bring you food and baby you. But only if you know that it’s a temporary interruption in an otherwise normal and productive life.

No one wants to get stuck in a perpetual state of dependence on others. No one wants to lose their ability to work hard, exercise and be productive. Working and creating and serving others imbues meaning and purpose into our lives. Losing that ability is not the equivalent of a multi-year vacation.

People sometimes say things like, “It must be nice to have so much time to rest.” And I guess it makes sense. It’s only natural to assume that laying in a warm bed would be a restful activity. It is for most people. How would they know that laying in bed with a chronic illness is a lot more like being in prison than it is like enjoying a long vacation?

The truth is, it can be impossible to rest when every nerve in your body is pulsing with unpleasant sensations like pain and nausea and numbness and tingling and itchiness. There is no peace in such a world. I spent my days playing games on my phone to distract myself from a body that was screaming in agony. No one else could hear the screaming but it was hard for me to hear anything else.

I played games on my phone because I couldn’t sit up to play them on my computer. I picked simple games because my head was muddled and I couldn’t think. I played them with the sound turned off and the screen brightness on the lowest setting because my nervous system was so vulnerable that anything more would be overstimulating. In those days, even falling asleep was a huge battle we had to fight with drugs and foot massages and so-quiet-you-could barely-hear-them lullabies.

Some might assume that chronic illness patients must have tons of time to watch movies and read. After all, those are the things they do when they’re ill. A lot of chronic illness patients do spend time reading and watching movies but sadly, many are unable to do those things.

I couldn’t watch movies for a long time both because of my psychiatric symptoms and also my light and sound sensitivity. Yes, it is possible to be so sick that you can’t even watch movies. Chronic illnesses like Lyme Disease, ME/CFS, Fibromyalgia and autoimmune diseases can affect every body system. It’s not like a passing infection with miserable but distinct and limited symptoms. It feels like your whole body is shutting down.

Even the brain is not spared. Thinking and conversing take more effort than you ever thought they could. I often described it as swimming through peanut butter. Reading can be impossible. I couldn’t read for most of my illness. Nothing sticks. Your memory starts to go. Writing one email can take days or weeks. I couldn’t write for most of my illness. Sometimes I couldn’t even send short texts. Chronic illness can rob you of the ability to do even the simple things that people normally do when they are suffering from a short-term illness or injury.

To make the experience even more puzzling to outsiders, abilities often come and go with the ebb and flow of symptoms. How come she could go out in her wheelchair last week but now she can’t even watch a movie? How come she wrote me a letter last month but now she isn’t replying to my texts?

Chronic illness isn’t static and symptoms are frequently worsening and improving and worsening again. Just because you could write a letter yesterday doesn’t mean you will be able to write a letter today. Just because you visited for half an hour with someone yesterday doesn’t mean you’ll be able to visit with someone today. In fact, if you did something mentally or physically draining yesterday you’ll probably have even less energy to work with today. You have to be careful when you’re dealing with such finite energy. Your batteries don’t get recharged with each new day. Push yourself too hard mentally or physically and you could crash big time.

People understand illnesses where you gradually recover. They also understand serious illnesses where you gradually die. What is a little harder to understand is a body that gets stuck in that valley between life and death for years on end. Someone who has an illness that takes them to the edge of death repeatedly. Someone who creeps back toward life and enjoys good days only to be thrown down again.

That’s okay. It’s almost impossible to understand chronic illness completely if you haven’t lived it but I hope my words have helped a little. Chronic illness patients often complain that friends and family don’t understand and don’t offer the support they need. But I sometimes wonder if this is, in part, due to the fact that our illnesses have robbed us of the ability to communicate effectively. Perhaps it is not that our friends and family are unwilling to support and listen. Maybe it’s that we are too sick to explain our plight in a compelling way. Too sick to even identify what we need and want most.

It is my hope, as a recovering chronic illness sufferer, to lend my voice to those who are still stuck in aching bodies and clumsy brains. So that those compassionate souls who want to help can understand how to put themselves in a chronic illness sufferer’s shoes. And so that those who are sick can learn to give grace to those well-meaning people who often say such insensitive and painful things. It is my hope to write words that will help to build bridges between the healthy and the sick.

By the way, Brett and I made a beautiful PDF of my favorite resources for suffering souls. I created the content and he made it look fancy with his superduper graphic design skills. It’s available for free to my email subscribers. Click here to sign up and receive 5 Resources for the Suffering Soul.

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  • Jen

    Thank you for addressing this topic, as it is one I have struggled with a lot over the years. Just shared your post. I think it is relevant for a lot of people. Can’t wait to catch up on your last week’s posts. Moving/starting over has about done me in, but I’m still so encouraged by all the progress you’re making and the direction your blog is taking!

    October 2, 2017 at 1:16 pm Reply
    • Ana Harris

      I’m so glad to hear that Jen! I’m sorry moving has been difficult. That’s to be expected. I hope you bounce back quickly and start to see a lot of improvement!

      October 2, 2017 at 5:18 pm Reply
  • Laura Davison

    <3 <3 <3 <3
    Thank you so much for this! Over my year of not being able to study because of my depression and anxiety, I've had so many people comment "it must be nice to have so much free time". It's hard not to snap back "I'd prefer being able to cook food without having a panic attack, thanks".
    And thank you for your desire to help other people begin to understand your experience with chronic illness, and to help bridge that gap between the healthy and the unwell.

    October 2, 2017 at 2:51 pm Reply
    • Ana Harris

      I can relate so much to this Laura! I’m sorry! I know it’s even harder to explain when it comes to mental illness.

      October 2, 2017 at 5:20 pm Reply
  • Katherine Forster

    I’ve never experienced anything close to this, so up till recently I didn’t even have a conception of what chronic illness was. Your blog has helped me understand so much more, and it’s been an incredible joy to follow your and Brett’s story. Praying always!

    October 2, 2017 at 2:53 pm Reply
    • Ana Harris

      Wow! Thank you so much Katherine! I’m so honored that you would read and follow my story and be willing to learn more. 💕

      October 2, 2017 at 5:21 pm Reply
  • Nanette Fenn

    Very good job, Ana.

    October 2, 2017 at 5:16 pm Reply
    • Ana Harris

      Thank you so much Nanette!

      October 2, 2017 at 5:22 pm Reply
  • Jenny

    As someone who fights both fibromyalgia and depression, I relate so much to this! I work through the pain, tiredness and sadness everyday and it’s hard to explain why I come home and head right to bed. Thanks for putting it a little bit into words!

    October 2, 2017 at 5:53 pm Reply
    • Ana Harris

      I’m so sorry Jenny! I’m glad you felt like I was able to put the experience into words a little bit. It really is hard to explain.

      October 3, 2017 at 2:16 pm Reply
  • Lisa

    Wow, thanks Ana. As I read I was reminded of the months I spent mostly unable to do more than take care if my basic needs while I very very very slowly recovered from a traumatic brain injury. I hadn’t thought of that for years, but it wasn’t really all that long ago. My head hurts thinking about it! I’m so glad I’m not in that space anymore. Thank you Jesus!!!! Thank you for healing me.

    October 2, 2017 at 5:58 pm Reply
    • Ana Harris

      Wow! I didn’t know you had suffered a traumatic brain injury. I’m so glad you were able to recover from that! Praise God!

      October 3, 2017 at 2:18 pm Reply
  • Ruth Meyer

    Love this, Ana. These are things I’ve tried to explain, to myself, and to others, many times in recent years. I’m learning to be gracious, and to know that there will be days I can’t handle held, and days the help can’t handle me! That just kind of happens. One thing I struggle with at times, is not telling people if I’m really doing much better. I feel, if I tell them I feel great today, they stop taking my illness seriously, their brain turns the “she’s back to normal now” switch, and they start expecting me to be something I still am not. Part of it is my own doubt. When your health fluctuates a lot, you get to feeling better health is never guaranteed. You don’t want to let your own guard down, and you don’t want to lose that level of focus you were getting from others. At times it feels like an attention grab, like I’m taking advantage of others, and just using my illness. Then, the next day I’m back to feeling helpless and weak, and realize I still need all the help I can get. One thing I’ve learned, is to always take advantage of good days, not just to enjoy them, but to take a look back and thank all those who have stayed by my side, or kept me in their thoughts and prayers through it all. Communication is the number one problem when your health takes a dive, so I’m always looking for new and better ways to ease the two-way street of conversation, for everyone’s benefit. One metaphor I just thought of is this: getting sick for a healthy person is like taking a deep dive. You hold your breath, you go down, until you run out, then you come up for air. It was tense, it was tough, but you’re a better stronger person for the experience. You survived. A chronic illness is like being shoved under water, without a chance to catch your breath, then forced to swim under Antarctica. Every few days you find a hole in the ice to poke your head out and catch a breath, but you’re pretty much in it for the long haul. If you make it to the other side in one piece, your body is no longer the same shape and condition it was in when you started. It’s not a hopeless prospect, but people need to know, it’s not the same. Even if my health completely returns to me after my bout of illness, I’m not going to be the same. Some things just take longer to heal, and other things stay with you your whole life. So, the take-away is: I may not be able to see the blue sky all the time, but I’m starting to see the beauty and wonders of the sea below the ice.

    October 2, 2017 at 8:22 pm Reply
    • Ana Harris

      I love this Ruth! I can definitely relate. Great analogy! Thank you for putting that into words. It’s definitely hard for people to understand the up and down nature of our health struggles.

      October 3, 2017 at 2:20 pm Reply
  • Nancy Garwick

    Thank you for sharing your journey! I learned a few years ago (2002) when my husband was ill for 8 months with adrenal problems and then had some recovery time after that, that people could not understand lingering illness unless they themselves had been through it. They did not always see when my normally stoic husband would cry after listening to a news story or when I had to keep my young children quiet because he couldn’t tolerate loud noises. I did have a few people who had gone through struggles that really held us up in prayer and helped as much as they could. Still I didn’t always know what I needed, but I had to “keep it together” and try to make life as normal as possible for my children while caring for my husband and not always knowing where to turn next for treatment. But we made it through, and I am praying that you and your dear husband will make it through! I think what really helped us get through was reading Scripture. It seemed to comfort my husband and helped during the really hard moments. What amazing lessons you are learning in this journey! God will use this in your life later, I am sure, because he never wastes what he teaches us – He always uses what we learn early in our lives later on to help others! Keep trusting the Lord and growing closer to Him! I am praying for you!

    October 4, 2017 at 5:54 am Reply
    • Ana Harris

      Thank you so much for sharing your story Nancy and for the encouragement. You are so right! 💕

      October 6, 2017 at 1:32 pm Reply
  • Jennifer

    I appreciate this so much, Ana. I’ve lived with chronic pelvic pain for 10 years, and there are times when even *I* still don’t know how to deal with it. I feel hurt that no one in my life seems to give me the help and comfort I desire (much like you want to be taken care of when you have the flu, when I’ve been unable to get out of bed for days I want people to bring me food and offer me consolation) but at the very same time, I also hate that everyone who knows about my chronic pain treats me like “someone in pain” instead of “me”. It’s a frustrating dichotomy to deal with, both in myself and in my relationships. “Take care of me, I don’t feel good, and also, pretend like I’m completely normal, whole and healthy” is a hard tightrope to expect someone to walk, but being fully aware of that doesn’t seem to make any of this easier. :/

    I am really enjoying following your journey. I continue to pray for you and Brett as you navigate your recover, and I especially pray that God will continue your healing to the fullest wellness one can experience this side of heaven.

    October 11, 2017 at 1:55 pm Reply
    • Ana Harris

      I can totally relate to this Jennifer! I’m so sorry! Sometimes the things we want seem contradictory we want empathy but we also want to be treated as normal people… I think what we really want is to BE normal and well. I’m glad my article resonated with you and I hope you find relief from pain and the strength to endure until that relief comes.

      Thank you so much for praying for me! I’m so grateful! God bless you and keep you sister!

      October 12, 2017 at 9:07 am Reply
  • Debora

    Ana, thank you. It IS so difficult to explain what it’s like, and even exasperating when I try, but receive comments back that show I either fell on deaf ears, or I receive some ridiculous comment in return. It’s hard and discouraging knowing that people I love become tired of the plight that I deal with daily, and judge me based on their healthy lives. Thankfully, there is a community of people who understand, and I do have a few rare birds in my life who love me beyond my laundry list of autoimmune diseases and chronic migraines.
    Great article. I’m going to share, and see who it sticks to! LOL
    Wishing you wellness.

    December 18, 2017 at 11:34 am Reply
  • April Boyer

    What a valuable resource! It is so important to be able to see a person’s conflict from their side. That is where compassion grows. Thanks

    February 2, 2018 at 4:19 pm Reply
    • Ana Harris

      I’m so glad it resonated April. 💕

      February 2, 2018 at 4:40 pm Reply
  • Lee Ann

    Thank you so much for this post. So often I find myself unable to describe my experience with chronic Lyme, and it is such a blessing when someone else is able to verbalize it!

    July 21, 2018 at 10:58 pm Reply
    • Ana Harris

      I’m so glad to hear that this post is able to help, Lee Ann. 💕

      July 22, 2018 at 8:14 am Reply
  • Zuzana

    This is brilliant… Thank you so much for putting this into words in such a relatable way.. I would like to share this on my FB if that is all right. It might help those is my surroundings to understand what I am not able to explain. And that would be a tremendous help… Thank you for making me not feel like an alien for the first time in a long time.

    October 4, 2020 at 2:25 pm Reply
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