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12 Tips for Healthy People If You Encounter Someone With an Invisible Illness

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When Florida State played against Louisville in football a couple years ago, somewhere along the way player Jameis Winston hurt his leg, resulting in a limp for the remainder of the football game. During a post-game interview he stated, “Pain is temporary,” and was praised for his persistence despite the ailment.

I say kudos to you for pushing through. Your team, school and fans commend you for blocking out the pain to finish what you started. It lit a small fire on my Twitter feed during the moments following his speech; everyone was ready to conquer his or her temporary pains.

Unfortunately, not all pain can be perceived this way. Ask anyone suffering from a chronic illness; I’m positive you personally know someone. At least one (Hint: Hi).

Ask them how many days they overused their spoons this week.

Ask them how much sleep they lost due to pain.

Ask them how many times they had to find help to complete a simple task.

Ask them how much they missed out on because they didn’t have the energy to participate.

Ask them how many times the smile on their face was a well-rehearsed performance.

Ask them how difficult it was to explain the situation every single day.

Ask them how regretful they felt when people got offended due to lack of information.

Pain is not temporary. It is constant. And it’s impossible to explain.

It’s day-by-day, hour-by-hour and minute-by-minute. It’s always changing, but always here. For me, what I put into my body drastically effects how I feel. For others, simply being causes great physical pain. I can’t put this into terms you will understand, but I can give you insight.

In fact, I can give you a list:

1. Be understanding when I don’t want to hang out with you. It isn’t personal. Chances are, I’ve already used up my energy for the day. Even though spending time with you means a lot to me, I just can’t do it. Making plans ahead of time will help. I can allot my energy accordingly.

2. I’m not being lazy when I need more sleep than you. I get it: you have three tests this week, two papers, four classes, 15 hours at work, and a social life. You’re lucky to snag six to seven hours of sleep a night and still manage to watch a few episodes of that one show on Netflix. So why can’t we keep up? Our bodies won’t allow it. To me, 10 hours of sleep has the same effect. Since humans are wired to rejuvenate and heal during sleep, it’s even more important for me to get as much as possible. My immune system is working in overdrive all day to keep up with my busy life, so it takes longer to replenish what I lost. If I go to bed at 10 p.m. and don’t wake up until 10 a.m. the next morning, be gracious when I complain about being tired six hours later. It’s all relative.

3. Get permission before eating our food. That chocolate bar isn’t just a chocolate bar. It’s a small piece of heaven that cost me three times more than the Hershey bar you ate yesterday, just because it has nontraditional ingredients. For some of us, our diets are pretty restricted and pricey, so if we offer to share the special items on our shelf in the pantry it means we like you. A lot. Don’t ruin it.

4. Have grace for my inability to tackle my share of housework. If you see a pile of dishes in our sink and a cluttered living room, don’t judge too harshly. Simple tasks become increasingly difficult when your body is constantly under attack. I will do my best to accomplish these tasks, but it all goes back to using spoons wisely. Sometimes energy spent with a friend is more rewarding than clean dishes.

5. If I discover a hidden store of energy, let me use it however I want. Every once in a while we may feel like accomplishing the world. Most likely, we’ll spend the day finishing the DIY projects we started a few months ago, using our untouched gym membership, and putting away the (now wrinkled) clean clothes that have occupied our laundry basket for the past two weeks. I’ll probably be too excited to remember that pile of dirty dishes in the sink, but don’t worry — I promise they’ll get done before the day’s end.

6. I am not my disease. It’s one thing for us to blame our circumstances on the disease we battle, but don’t take that as permission to use it against us. For some of us, our disease causes an endless number of problems. It might sound like a cop-out or excuse at this point, but we aren’t taking it for granted, promise. When my rebuttal is “Lyme disease” for not remembering what happened 10 minutes ago, I mean it. Just because I was sitting next to you when it happened doesn’t mean my brain stored the information. I will do my best to remember what you say if you promise to show grace when I forget.

7. Simple tasks aren’t always simple. If I need your help to turn on the faucet, open a Ziploc, or ask you to drive for the hundredth time, it isn’t because I’m being lazy. Dexterity is a privilege, not a right. Just ask someone who has lost it. The pain we encounter manifests in various ways… trust us to be honest with you and be willing to help us whenever possible.

8. Be uplifting. If I spend time with you often it means I care about you and trust you with my energy. I will lend an ear any time you are in need, but also need to be encouraged. Nothing extravagant, just enough to let me know I’m appreciated.

9. Be patient. You won’t find me complaining often about my situation, but when I do it’s probably three or four hundred times in one day. It’s annoying, but I promise to keep it to a minimum. After today you won’t hear about it for another month or two.

10. We aren’t looking for sympathy. Despite what we deal with, we’re usually pretty optimistic. We consider energy to be a valuable resource, so don’t spend yours feeling sorry for us.

11. It’s OK to talk about your pain. Just because you aren’t diagnosed with a disease doesn’t mean your pain is any less significant. You have a horrible headache today? Tell me about it. You dropped a book on your toe yesterday and it still hurts to walk? Let me know how you really feel. Pain isn’t always temporary, but it’s always relative. I don’t expect you to understand the pain I experience, so how can I understand yours? If the worst pain you’ve ever felt came from that book falling on your toe, it’s going to hurt! Don’t feel bad for being in pain. If anything, I’ll probably understand better than most.

12. Know that we appreciate you. In the midst of daily life we might forget to thank you every time you help us with something. This isn’t because we’re trying to take you for granted — we genuinely couldn’t do life without you. No one is perfect and we aren’t fragile, so speak up if you feel under appreciated. We’ll make it up to you.

That’s all I’ve got right now. This list is in no way meant to excuse someone just because they’re battling an invisible illness. I think we can discern the difference between suffering and laziness if we look close enough. My hope is that you will find this helpful. Each person is different and so is their story — take the time to ask questions and learn from them. You will probably be amazed.

group of friends sitting in a line next to a lake

Follow this journey on This Kate Lives.

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Originally published: April 28, 2016
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