Unless you live with Chronic Illness, it is hard to understand what it is like. - #ChronicIllness #Health
chronic illness

5 Things Healthy People Don’t Understand about Chronic Illness

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I remember being healthy and I remember being active in life. I enjoyed singing on the praise team, running my own virtual assistant business and nights out with my husband. My life was full, happy and I felt like I was finally happy in life. I can say now that I took my ability to be active completely for granted. Now, as I sit here getting ready to pack for a weekend trip, I realize what healthy people don’t understand about Chronic Illness.

5 Things Healthy People Don’t Understand

How do I know what healthy people don’t understand? Because I was once one of them.

  1. I can’t do anything spontaneously

    Everything has to have a plan and that plan has to have a back up plan. Sometimes, even the back up plan needs a back up plan. Why is this amount of planning necessary? Because it is the only way to feel even slight control over something that isn’t controllable. Discussing these contingency plans with my husband makes me feel comfortable to go out because I know that we are on the same page.

  2. I can’t really make plans

    That might seem a little confusing since #1 was all about making plans. But nothing on your calendar is set in stone. It is impossible to make concrete plans because you don’t really know what that day will bring. If invited to dinner, I always have to give a disclaimer that it all depends on my health that day. For more information read, One Day I Won’t Cancel.

  3. I don’t have the energy to do things

    I have to manage my activities to make the most out of the energy that I do have. For example, if I bath in the morning when I need to leave the house, I will not be physically able to do the activity planned. The act of bathing, getting ready at the same time is enough to require a long nap. If I know that I am going somewhere tomorrow, then I know that I have to shower the night before. Read When You Need a Nap After a Bath.

  4. I have to stay away from things that make my illness worse

    I can’t eat chocolate, uncured meat, watch fireworks, be around strong smells, look at Christmas lights or ride in a car at night without my sunglasses on. You may feel like it is extreme but this is what I have to do to be able to do things that are somewhat normal. Does this mean that sometimes I miss out on some things? Yes, it does but I am doing the best that I can do.

  5. I am not lazy or antisocial

    I stay at home because I don’t have a choice and I have not been able to drive in over 2 years. While I do spend a lot of time resting it is because my body requires me to do that. It would be amazing to be more social but it isn’t as easy as getting ready and going somewhere. I have to consider items 1-4 of this list as well as how I am feeling that day.

Chronic Illness isn’t Easy

Unless you live with Chronic Illness, it is hard to understand what it is like. - #ChronicIllness #HealthI miss the days of making plans for the week and knowing that nothing would really change in the plan. Having a life with limited health and energy isn’t fun. I do notice that when I try to explain what my illness is like and what it means for my life, that people look at me like I have 3 heads. Then there are always the occasional comment that drives home the fact that they just don’t get it. There are just some things about chronic illness that healthy people don’t understand.

So, I am packing for this weekend trip not knowing if I will actually be able to participate in the event we are going to. I have all of the plans and the contingency plans made and I hope I get to enjoy the weekend with my husband without any health issues.

To learn more about my chronic illness, Hemiplegic Migraine, read Chronic Hemiplegic Migraine Defined.


  • Tracy Hagler

    Wow! Although our illnesses are not the same, I have me/cfs, pots and fibromyalgia, I can still relate to every single thing that you said. I also blog. Thank you for sharing this. I wish all the chronic illness bloggers that I’ve found online, lived near me and were my friends from down the street! It would make life so much easier. Finally, People who understand! Yes!

    I think that’s the hardest part, “being misunderstood”. The deer in headlights look. Yes, it hurts. It even seems that church doesn’t understand either. We are not isolating ourselves and we aren’t just depressed. We have a physical disability that isolates us of no account of our own. We have no control over this. I think people think since we look the same on the outside, that we still have a choice, but we don’t. I’m finally getting to the point that I realize people can think and say whatever, I will never be able to fix it or make them understand. So, I will just continue working on me, the only one I can fix. I will continue doing what I can and stay positive with my head held high. Thanks again for this great blog, very encouraging ! ❤️

  • Bethan

    This is so accurate! I know it’s hard for healthy people to understand, but hopefully with them reading things like this they can be much more supportive and understanding of our limitations and challenges.

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