Things I Wish You Understood

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As we continue to try to navigate through this new existence we are living, we have to endure much more than rude, ignorant comments. We see the eye rolling when we say we aren’t feeling well. We hear the frustration when we have to cancel plans. Believe it or not, we sense the lack of belief and understanding of our condition when people ask why we can’t work, or why they never see us out and about anymore. Even though you don’t think you are responding your body language speaks volumes to us. But we also have those friends and family member who truly mean well. They “understand” as much as someone who isn’t familiar with chronic illness would and try hard to be, for lack of a better word, sympathetic to what we are going through.

So how do we respond to things such as this, “Even if you’re hurting and in your sweats, we’d still like to see you.” Or “Instead of you having to go out, we could all come to you at your house, we will bring all the food, you don’t have to lift a finger.” Now I’ll be the first to admit, I do know that these people really are trying to be genuinely nice, but here’s where lack of truly understanding this condition shows up. We have all heard so many similar things from those who mean well, and we all know it’s so hard to be true to yourself and listen to your body because even though we love them, they just don’t understand and we don’t want to disappoint anyone once again. So to that end, for those who know we have a chronic illness but just don’t quite get it…

To the extended family members who say, “we will just keep inviting you till you can come for something.” Thank you for inviting me and wanting to include me. Yes, I would like to go out with you, and I will when my body allows me to. I love spending time with you all and truly I am not trying to blow you off. We are family and that means everything to me so I appreciate you inviting me but please don’t take it personally if I say no. When you say that you don’t care if I’m in my sweats, or look tired, or we’d like to see you “even with hurts,” again, it’s not that I don’t want to. I’m not concerned at how I might look, or concerned about if you see me in pain.

My concern is if I can’t get comfortable at home and am having a lot of pain, in no way am I going to enjoy anything, even a simple conversation can be taxing. With this pain also comes a lot of fatigue. It’s not the I didn’t sleep well kind of fatigue. It’s the I don’t want to get up off the couch, I do not ever wanna move, haven’t rested in 10 years kind of fatigue. And that also makes my pain worse, makes me more uncomfortable and makes me want to hide.

When my family says “we just miss you,” honestly I miss you too, almost as much as I miss me! I miss not joining you at every family get together, I miss being able to go for a boat ride, I miss not doing a spontaneous dinner date with all of you. I miss being able to enjoy myself when I have a houseful at the holidays. Instead, I get anxious, tired, agitated and spend the evening looking at my watch as to when people might start heading home so I can crash. And with all of that comes an all consuming guilt about having to miss out on all those things.

To my friends, when you say “we will come to you instead of going out, and we will bring all the food, don’t worry you don’t have to do anything,” thank you. Thank you for thinking about me and adjusting to my needs. However, as good as this sounds to you, it causes me so much stress. In the end, I know you don’t care how my house looks, you will overlook the dirty dishes and loads of laundry that need to be done. But for me, I want my house to be cleaned up, and things to be taken care of when I have guests.

When you say, “it’s perfectly fine if you just lay on the couch while we are there, we don’t care,” but I do. I don’t want you to see me when I’m that vulnerable. I don’t want to you to see the struggles I’m going through or to see me as weak. I want to be engaged in conversations, I want to enjoy your company and I want to laugh. But if I’m in enough pain to keep my on the couch, laughter will be hard to come by. My mind will be in a hundred other places because I’m so anxious. When you say I don’t have to worry about food or preparation, I will anyway. I don’t want guests in my house without being hospitable. And while I don’t have to worry while you are here, my work begins when you leave to clean up and put things away. This causes me stress and eventually more pain.

What I would like you to all understand is that while going out for dinner with any of you, going to your house to watch a game, or going to a family get together doesn’t seem like much to you, it is so much for me. I wish you could understand the stress of mentally trying to prepare for these things, the anxiety it causes me, the guilt I cannot get rid of if I have to say no. I won’t show you the pain I’m enduring from forcing myself to get out of the house to try to enjoy an outing. I’m not looking for pity and I don’t want to talk about what this condition has done to my life, I want to be able to enjoy the time we spend together.

I want you to understand how much work life, and living life has become for me. More days than not are truly a struggle for me mentally and physically. So please know that if I say no, it’s because truly I just can’t do it that day. But please, don’t give up asking and don’t give up on me when I say no more times than I say yes. I hope there will be a day that I can get back to the old me and start enjoying life again. Until then, please be patient with me.

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