4 Things You Need to Know About My Invisible Chronic Illness

I’ve discovered one social constant with my invisible chronic illness.[1] When there’s not a visibly horrible deformity for people to latch onto, there’s always one question that bubbles beneath the surface. “Are you sure you’re really sick and that it’s not just in your head?” I’m here to tell you: yes I’m sure; and while I may look like I’m just fine, there’s a mountain’s worth of adaptations I’ve made to make sure sure that I can pass as normal.

Here’s what you need to know about my invisible chronic illness that you wouldn’t know by immediately looking at me.

1) There are days I wake up and just don’t have it.

 Some days, I wake up, and I just don’t have it. It may have to do with another interacting illness or a bad night’s sleep, but sometimes, I can sleep, exercise, eat well, and still wake up without being able to function.[2] Here’s the exciting part: I can’t always predict when these days will happen. It’s like playing Russian Roulette with your body. Most of the time the chamber’s empty, but occasionally, all your plans will have to be chucked out the window.[3]

2) My normal is not your normal.

        When you say, “How are you doing?,” I will probably answer, “Okay.”[4]

Sometimes that’s because I’m lying through my teeth.

Most of the time, I’m genuinely telling the truth. It’s just that my “okay” is very different than your “okay.” When you have an invisible chronic illness for a while, you develop a new “normal”, one that is “okay” for me, but you wouldn’t consider “okay” for you.

So what does my normal look like? Here’s one example.

When you ask me to do something, I may say yes, but I’ll be paying for it a lot longer than you will. For instance, I moved earlier this summer. It was a crazy, chaotic, stressful week, one that involved a lot of coffee and a lot of boxes. It would have been an exhausting for anyone. The difference is this: you take a few days off, grab a few extra cups of coffee, and power onwards, no harm done. For me, it is now a full three months later, and I’m still not back to what I was before I moved. Don’t get me wrong, I’m improving, but there’s a good chance I won’t be back to normal[5] until Thanksgiving.

 3) My time is my most valuable gift.

I don’t get a lot of A-level days and I don’t get a lot of A-level hours. I work like a fiend whenever I’m feeling good, because I don’t know when that will change and how much my plans will be disrupted as a result.  If I commit to something with you, especially if it involves disrupting my sleep, having multiple long days in a row, or giving up the good part of a workday, know that I’m giving you a huge gift.

 4) I’m probably not getting better anytime soon (and I’m okay with that.)

There is no one more invested in my health than I am. There is no one who has done more research about my illness than I have. This is just my reality. I’ve learned to live with it, to adapt within its limitations, and find joy in a life that is more physically limited than most. My guess is that I’ve probably heard of whatever medical remedy that you discovered on Good Morning America, and there are good reasons why I haven’t tried it, or why I did and it didn’t work for me.

I’m not miserable either. My illness has offered me great gifts.  I’ve learned the value of stopping and resting, which is something that this type-A personality would never have learned if I didn’t have my face rubbed in my limitations all the time. I’ve learned compassion for the elderly, because I have the energy of someone much closer to seventy than to someone who’s thirty-two. I’ve learned to be sympathetic to outsiders, because my illness has often made it difficult for me to form friendships and be accepted by my peer groups. There are substantial ways that being sick has made me a much better person that I would ever be otherwise.

 


In other words, next time you see me (or the millions of people like me), just remember:

Yes: I’m actually sick.

        No: I’m not getting better anytime soon.

        Yes: I still live a meaningful life.

 

 


[1] “Wait, Ben, you’re chronically ill?” Yup. Since I was nine.

“You look fine to me!” Of course I look fine, that’s why we call it an invisible chronic illness.

[2] And no, it doesn’t matter how much extra coffee I drink, whether I take an extra nap, or whether I’m using your latest exciting herbal concoction.

[3] Even more exciting: I may not know whether I’m chronic-illness-tired or just-plain-tired until I’ve tried a few cups of coffee and attempted to start my day.

[4] If I’m doing poorly, I’ll probably just say, “I’m sick.” Ironically, I find that people find it far easier to be compassionate when you have a cold then when you have an invisible chronic illness.

[5] What is that normal? See point one.

33 thoughts on “4 Things You Need to Know About My Invisible Chronic Illness

    1. This is such a good analysis. I’ve been trying for years to find the right words. I get a pain in my stomach when someone says, “you look so good. ” I can hardly say thank you.” Isn’t it miserable to not be able to plan in advance?

      1. It’s such an encouragement to me to see someone finding this post a year after I wrote it. Many blessings for you as you continue your journey through your illness – I understand firsthand how difficult it is!

  1. Ben wow! Someone who actually put in words how someone chronically ill feels! I really hope all those people who say things like she looks good. And if she ate better . Will read this! Good for you! Jackie

  2. Ben, thank you for articulating your experience. Although my condition is different (chronic migraine), I relate deeply to what you have written. I know the frustration of unexpectedly having days written off to illness (and of days spent scrambling to catch up), it hurts when people belittle migraine without understanding it, and I often struggle with feeling like I am not pulling my weight because if I overcommit, I get sick. Thank you for the reminder that the contributions we are able to make are still valuable.

  3. Thank you for once again for putting into words what is so hard to find words to express. “Okay” and “Sick” are my phrases too. Some people understand better than others. I too have found treasures in the darkness of these nasty invisible challenges.

    We never walk alone.

  4. Well written, Ben. Maybe this will encourage those who are skeptical to be a bit more thoughtful before saying things like, “you don’t look sick.” Thank you, Ben.

  5. Ben. I so feel for all that you have said. I have had this 27 years, since I was 37. I had a daughter, and so far, she is twenty three and hopefully will not develop cfs. She did overcome, and still does some learning disabilities.

    Your attitude is good–for the article. But I know the toll of being a “good sick person”. I find people in my religion, I think same as yours, don’t seem to get the difference between complaining about little stupid things– and this really big monster we have to live with everyday. I hope you have family support. But it also angers me that you became sick at 9. It just goes to show the damage done, and how many more people had to suffer with this because doctors, the cdc, nih, and infectious disease specialists have been in denial for 30 years. Yes, it’s invisible. We crawl into our respective holes when we are real sick– and they can ignore us. Thank you for being brave to tell your story. Maybe there will be more treatments, cure? During our lifetimes.

    1. That would be wonderful if they did! During my childhood, it was the unconditional support of my family and my church that kept me together, even as I lost friends and was harassed by teachers and school administrators. Community is still important, especially when your disease so really can isolate.

  6. I feel like I just read my life scenario. Except I can not drink coffee or anything caffeinated. Very sad because I love coffee and iced tea. I can t even eat chocolate. It just wacks my body out and keeps me up all night. I worked a kitchen job last year,which I should not have been doing at all. It was just part-time but I am still paying for it today. And now I am having chest pains and palpitations. I am taking a betablocker but I still have to lay down alot.

  7. This is so spot on! I love how you have just four points that are usually the ones that people ask about or don’t understand. When I retired in 2001 I really wanted to volunteer at the hospital, but I cannot commit to scheduled days and hours.(Nor can I work, even part-time!) I never know when I just can’t do it and I HATE to call and cancel. Anyway, very good article! Thank you!

  8. Ben – this is by far the best blog post about CFS that I’ve ever read. It’s so difficult to try to explain one’s bone-weary fatigue and other symptoms to friends and family.
    Also, there’s that continual effort to do one’s best to appear “normal” in social situations, gamely putting on a brave face, only to pay for it dearly afterwards.
    Thank you for such an authentic expression of what living with CFS is really like.

      1. Hi Ben – I have ME/CFS & FMS w/associated diseases & conditions. Health problems began when I was 7, I’m now 74. My adult daughter has been diagnosed w/FMS too. So, my “normal” has been a lifetime experience. Your post was both articulate & a confirmation for “invisible” chronic disease.

      2. Hi Ben – I have ME/CFS & FMS w/associated diseases & conditions. Health problems began when I was 7, I’m now 74. My adult daughter has been diagnosed w/FMS too. So, my “normal” has been a lifetime experience. Your post was both articulate & a confirmation for “invisible” chronic disease.

        1. I’m glad you found it a confirmation – for me, sometimes the biggest struggle is just remembering that I’m sick – and learning to be unapologetic in sharing it with others!

  9. I so understand. Have you seen the website, butyoudontlooksick.com? Oh, it so explains a chronic illness so well. God Bless you, mine is nothing like yours, but I still battle.

    1. Nice to learn there’s a website. It came from a great little book from a fibromyalgia organization. (If I didnt have “fibro fog Id remember more about it. It was comforting to me and I always keep a copy. (I may be wrong. It may be titled “But you look so good.”) I apologize for a bad brain night.

  10. Thank you for this, it explains me perfectly. Sometimes it is just not there, also what I was able to do is gone out of my brain, along with the confidence to try again!

  11. Wonderful post Ben… I can identify so well with it. What gets me? When I confide to a friend the gut-wrenching news that the doctor is considering another round of chemotherapy and they reply with “But you look so well!” It’s not about how you look! (And make-up can camophlage a multitude of ills.)

  12. And sorry you all for the extremely long delay in approving these comments. New Blogger Lesson #322: Using spam-filtering software, so actual comments don’t get drowned in spam!

  13. I actually do try to avoid showing signs of being sick with others. I don’t want to be known as the sick friend. I hate that I often have to cancel meetng with someone. So when I do get to meet with a friend, their energy pulls out my best. But they generally have no idea that I am pushing as hard as I can, ignoring how I feel as much as possible, and will have to rest later because of our encounter. But my friends are so very worth it!!

  14. I faked feeling well for too long. Now, after 16 years I do look sick, am practically bedridden and hopeless. I wish I didn’t remember how active and successful I was. I’m a fraction of who I used to be.

  15. Thank you for this, Ben. I have the same conversation multiple times with nearly everyone I know, and still many do not understand. My own sister, who has perfect health (of course), has a hard time understanding. When she asks why I haven’t been able to lose weight or why I’m not coloring my grating hair, I get so frustrated! How often have I tried to explain the effect of steroids on weight or that meds make my hair very fragile? I get angry with myself for ‘covering’ for everyone else! I’m sending your blog to everyone in my life. Maybe if they hear it from someone else, they’ll finally believe me! Thank you!!

  16. Thank you, Ben for this post. I live with chronic depression, Seasonal Affective Disorder,and A.D.D. The fatigue that comes with staying up and focused is constant. I am indebted to Frankie Miller for the term “St. Mattress Day” for those days when brain overload slams me to the wall. Honoring St. Mattress Day gives me permission to keep the p.j.’s on and engage in some serious resting!

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