What People with Chronic Illness Wish Our Friends and Family Understood

Living with a chronic illness of any kind can truly impact all aspects of one’s life and make many things difficult. Poor health can put a strain on everything from your job and work life, as well as the relationships that you hold most dear. Over the years I’ve found that one of the hardest parts of living with a chronic condition is keeping your relationships healthy. While this may seem odd to those who haven’t walked this path, sadly, it’s very much an issue.

Until you are sick, you don’t see how much a strain can be put on your relationships by a chronic illness. When you have to routinely cancel plans or spend long periods at home in bed, it can be incredibly hard for those in your life to understand. This especially occurs when you have an ‘invisible’ condition such as Lupus or Multiple Sclerosis.

There are many things that those who deal with some kind of chronic illness (myself included) wish our able-bodied counterparts could understand. In this article, we are going to look at 5 things we wish our friends and family understood about living with a chronic illness.

I DO NOT like cancelling plans

Contrary to many people’s beliefs, most of the time we don’t like cancelling plans. Sure, there are times when we just don’t want to do something or go anywhere, but that can be the case for anyone, NOT just those who are chronically ill. Most of the time we would much rather be out and about doing things and being around people than be stuck at home. But sadly, sometimes that is not an option and we have to cancel plans. It is often easier to assume the worse than it is to find out what is really going on. People can often draw their own conclusions instead of asking why people with chronic illness are doing things like cancelling plans. I have found that in order to help those around us understand what it’s like to live with a chronic condition, we have to be willing and ready to be open about our health. We also have to be willing to work with those closest to us to help them understand what it’s like on our side of the table.

My health does not define me

My health does not define me – While our health may impact almost every aspect of our life, it is not all that we are. For instance, I am not just Amber who has Lupus. I am so much more than that. I do have lupus, but my illness is not what solely defines me. I am Amber with Lupus, who is a daughter, a sister, a friend, a patient advocate, and so much more. So please remember we are so much more than our health and should never be defined by it.

Just because I look okay, does not mean I feel okay!

It is easy to put on a brave face and to cover how badly I feel with makeup, for a short time. Outwardly I may look put together, but what you wouldn’t know is that it took hours to get ready because I had to take a break every few minutes. Living with an invisible illness is tricky, people can never tell I feel based on my outward appearance. So I wish people would please just ask, instead of assuming.

Please don’t compare my illness or symptoms to another person’s

Just like no two people are the same, no two cases of a chronic illness are the same. You may know three people who all have Lupus, but more likely than not they don’t have the same issues. Please don’t compare me to anyone else you know with my condition. You would never compare two Americans just because they are American, so please don’t compare the chronically ill. Also, if you know someone who died from my condition, I don’t need to know!!!

Just because I felt good yesterday does not mean I will feel good today

Many people who are not chronically ill do not understand that in order to get out of the house, we have to scrape together energy and will likely pay for it tomorrow. Please don’t assume that just because I was out for a girl’s day yesterday that I will feel like going to brunch today. Chances are that if I really pushed myself yesterday, I will be paying for it today and quite possibly for several days to come. Please don’t assume that I am being untruthful when I say I am in bed today, just because you saw me when I was out yesterday.

Many people have a hard time understanding chronic illnesses since the majority of conditions that are chronic are invisible, meaning they can’t be seen by the naked eye. That alone can cause issues in relationships because one cannot see what the other is dealing with on a daily basis. The pain or the shortness of breath can’t be seen and therefore often can’t be understood. This is why it is imperative that we, as the chronically ill, provide education to those around us. It is imperative that we explain to those closest to us what a good day for us is as well as a bad day. If we never explain why we are always cancelling plans, people may eventually start to assume it’s due to something they are doing, rather than the fact that we just don’t feel like going out. It is also important that we let others help us remember, as noted in number two above, that we are not defined by our illness. While we want others to remember this, we also need to remember this for ourselves.

In closing, we can’t expect others to understand the things discussed above if we don’t ever tell them. If we never share our health with those around us, we can never expect people to fully understand. It’s important to try to ensure happy relationships with friends, which requires communication and understanding.

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