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What Love Looks Like to Me After My Chronic Illness Diagnosis

Language tends to be a big obstacle for me. I have trouble communicating how I am feeling. I don’t always feel safe to let people know that I need to rest, that I want some time away. The mind lies — it uses my confusion of language to be a vicious little chatterbox.

Since I have been diagnosed with a chronic illness, I have really struggled with what words to use. At first for me it was necessary to say I was sick, otherwise I would keep pushing myself and not take the time to really get better. But now, I feel that word doesn’t fit. I feel sick a lot of the time, my energy is low and I feel a lot of pain. But I am not just one thing. I am not just someone doctors gave a label to. I am not just someone struggling with everyday activities on certain days. And I am not just someone who feels great and happy. I am all of those things and more at any given moment.

We went to visit some friends this weekend, and words like “burden,” “selfish,” “helpless,” “high-maintenance,” “inconvenient,” “demanding” and “difficult” kept coming up. They were the lies my mind was telling me, but my friends made sure I felt loved and safe. I finally asked myself — is my idea of love too constricted and in need of expansion? It completely changed my state. After all, who else can define what love is to me, what love looks like to me, other than me?   

Love is my friends taking 30 minutes to look for a restaurant that is safe and comfortable for me to eat at.

Love is my husband understanding that I can’t eat with him at the airport because the sight and smell of food is making me feel sick and stressed.

Love is my friends being willing to try new things because it is safer for me to eat, for them to go out of their way to ensure the ingredients are the best possible even if they are more expensive.

Love is my husband going to pick up the dog after a long day of work so I can rest just a little bit longer.

Love is my best friend sending me videos and photos as she runs races I wanted to be running with her. It is her dedicating her miles to me, and her continuing to cheer me on even when I cancel at the last minute. 

Love is anyone understanding that sometimes I just need to rest and sleep, even if it is on their couch five minutes after I walk in the door. It is them letting me sleep even though they want to spend to time with me.

Love is someone making a meal for me, and just being happy I am keeping them company as they do all the work. 

Love is my husband remembering what time my doctor’s appointments are so he can send me a sweet message at the perfect time.

Love is me listening to my body and resting, sleeping and speaking up if something is going to help.

Love is me communicating with my medical team and asking for more pain medication instead of just accepting that procedures are going to be painful. It is me realizing that not all the pain is necessary, and in fact it helps them to treat me better. It is information, not complaining. 

Love is the friend who sends me messages every couple of days asking me to lunch and checking in with me. And when I respond that eating out is difficult, he reminds me that the food is not the important part, he just wants to see me and make sure I am doing all right. 

Love is sometimes crying because of the pain or stress or whatever, no matter if I am in the grocery store, a plane, anywhere. It is letting the emotions go instead of hanging on to them because I am worried about what people will think. 

What will you decide love is today?

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