Managing social expectations can be difficult when you have a chronic illness. Social expectations of what your illness “should” be like, can be greatly influenced by things seen on TV and movies. Unfortunately, many illnesses and disabilities get portrayed in just one way. And that depiction can sometimes be the only experience of an illness or disability someone has in their life.

You may have seen commercials for new medications that  have actors portraying your chronic illness. Sometimes it is hard to see a person in the commercial doing all these things that you cannot. People in those commercials always seem to have a positive attitude about their condition. 

You might see things on social media of people accomplishing milestones that you’re worried you may never get to. It is okay to feel frustrated. It is okay to feel hurt by other people’s experiences. No two people, and no two journeys are alike. 

What can we do to help when we are feeling like that?

Recognize how strong you are. Say to yourself “this is really hard, but I am working on it.” You are here in this moment, and you know what that means? You have been brave enough to not give up or give in to your disability or chronic illness.

Allow yourself to feel frustration, disappointment, anger, etc. Don’t let somebody tell you that your emotions are bad or invalid. You are going to feel, however you are going to feel. Practice not pushing the emotion away, or pushing the emotion down. But also practice not clinging to that emotion or holding grudges. I say practice, because this will take time to get better at accomplishing.

Focus on what you know to be true in this moment. Try to avoid thinking only in extremes. For example “I never will” or “it is wrong that” or “it is not fair that” are parts of extreme thinking. Remind yourself of the good you have right now. Read more about stating your one good thing here.

Finish by thinking of pleasant things that you can do today that makes you feel good. And acknowledge how amazing and wonderful it is that you can do that. There are many activities that can bring joy that don’t require much effort, but can bring much joy. Can’t think of anything off hand? The following list contains Covid-19 restriction friendly suggestions.

• Singing (regardless of talent level)

• Talking with a friend (on the phone or in person)

• Day dreaming (stick to good thoughts)

• Gaming (board or video)

• Playing with pets (this is good for them too)

• Reading (books or blogs – like this one!)

• Napping (one of my favorites)

• Learning something new (language, hobby, musical instrument)

Here is my example of using the above technique: I see people who are days, months, and years seizure-free via social media. Right now in my life I’m lucky to go a couple of hours seizure-free. Therefore, I can feel quite discouraged and jealous at times.

But, the fact that I can help bring awareness about the different experiences people have with epilepsy, and other chronic illnesses makes me feel proud. Helping more of the general public be aware that not all epilepsy looks the same, is very rewarding. 

My hope is, with more education, social expectations will be more realistic. My truth in this moment is: I know I have the capability of reaching towards that goal, with this blog. It is hard, but I am working on it.

Having a chronic illness comes with a lot of unpredictability. You may not know what the future may hold. But together we can work on bringing more joy and comfort in the now.

What are some frustrations you experience with your, or a loved ones chronic illness? Do you think you will try what was discussed above in those moments? Feel free to share in the comments.