Understanding the Most Misunderstood Aspects of Chronic Illness

I am going to write this post in an effort to hopefully provide some much needed insight and education for those who do not personally have a chronic illness.

Some people are born chronically ill and that is the only “normal” they know. Other people, like myself, who were once extremely healthy, may get a condition suddenly that changes their whole lives. It’s not just about a physical transformation, but a mental, emotional, intellectual and spiritual transformation. Everything is affected in some way and how each person is affected depends on a myriad of factors that either work favorably or unfavorably: a support system (or lack thereof), access to medical care, monetary means, abilities/disabilities, temperament, spiritual relationship, etc.

People try to be “helpful” and well-meaning in so many different ways. A phone call or visit to reach out is always so nice. Please be careful with some of the things that you say to chronically ill people. A simple “How are you feeling today?” is preferred to “Feeling stronger today?” This can feel like someone is projecting their expectation of you to get better when you could honestly not be further from “feeling better.” The honest truth is that I do not know anybody who would want to struggle with a debilitating illness. Everyone I’ve talked to would much rather be outside playing with kids, spending time with families or holding down a job. When you project how you believe somebody should feel on them, you are denying how they really feel.

Many people with chronic illness have some good days and some bad days. Therefore, “tentative” is often the most frequently used word in our vocabulary. I can make all the plans I want, but those plans aren’t always going to be possible. I often don’t know how I am going to feel until minutes before I try to tackle my plans. If I call you and let you know I can’t participate that particular day, it does not mean I don’t want to see you – or, if I am sick and possibly contagious, it’s because I don’t want to pass anything on to you. My immune system is often being attacked by my own body, so it takes me much longer than the average person to recover.

The biggest insensitivity is trying to tell someone to “think positive” all the time. There are going to be times where life is not 100 percent positive and you just need to feel the very real feelings that come with the changes that have been brought your way. There are rays of sunshine in every day and many things for which to be grateful. Don’t deny people the opportunity to feel their very deep and real feelings by invalidating them with the cliched phrase: “You just have to be more positive or think more positively.” Saying something like, “I can’t imagine how hard or deeply frustrating it must be to have difficulty doing the things you love that once came so easy. I’m praying for you…” goes much further.

Sometimes I can still be social if you come to me. The world keeps on moving outside my four walls and I am not inside 100 percent of the time due to choice. It drains so much energy getting ready to go to anything that at times, I am sleeping before I even get somewhere. If you come to me, that is less energy I have to exert getting ready. I can sometimes have enough energy to play a game or build a puzzle for an hour or just sit around and talk about a whole slew of topics – as long as an activity isn’t high energy. I love when people understand that. When people have stopped by for a visit – especially different people I’m not used to seeing on a daily basis – I feel like I’ve had the best day in the world, even if visits can be tiring sometimes.

One of the hardest challenges is getting ready. This used to be effortless. I got up, took a shower every morning, got dressed, put on makeup, ate breakfast and went out the door to work. Now, getting out the door is a two- to three-hour process because I move more slowly and have infinitely more things to prepare that are necessary to have a productive and safe time out when I walk out the door. These are all accommodations that I had to learn how to make very suddenly. It has been an adjustment. There are rare days I feel well enough to be out for more than a few hours at a time. Please don’t push me to try harder. People know their own bodies best and they know when they’ve reached a maximum limit.

Please do not compare people with the same condition. I have Lyme disease and so do many of my friends. However, we struggle in totally different ways. Some of us have more dominant symptoms that affect some areas of life, but not others. Those same symptoms may not apply to another person who has Lyme disease. One of the most insensitive comments I’ve heard was, “So-and-so has Lyme disease and they were able to make it to (insert activity).” It is not fair to generalize that the same condition which affects two people will affect both people in the same way. A statement such as, “I really wish you could have made it to our group activity last week, and I’m sorry Mary couldn’t make it either. Both of you are in my thoughts regularly and I’m really learning a lot about Lyme disease from following what you both experience” might be a more sensitive response.

Many of us have heard, “You are too young for all of this. I don’t know anybody so young who has had as many health problems as you do” will not help a person struggling with chronic illness to feel better. Chronic illness is not an age discriminator. Children, teens, young adults and the elderly can all experience chronic illness. By making such comments, the person who has the chronic illness is again reminded that there are many aspects of their illness that may cause them to miss out on many activities in life. I don’t need to be reminded of that. I remember every single day.

I hear all the time that I “look great” and therefore must be getting better. Please know that there is no opportunity to truly “get better” as a person with chronic illness. The word “chronic” is used for a reason. My condition is ongoing. I have good and not-so-good days. So when I hear you say, “Get better soon” or “I hope you feel better soon!” what I hear you saying is, “I hope that you are able to catch a break soon and experience some relief from your symptoms.”

I say all of this because I would just encourage you to be sensitive to the fact that some day you could be the one with a chronic and debilitating illness and I’m almost certain you would want to be met with understanding, compassion and at least empathy from other people. I have a much greater appreciation for people’s challenges now that I’ve been through it myself than I did five years ago. It truly feels like being in a different person’s body.

I hope that this is helpful for somebody today!

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