A letter to the non-chronically ill

Dear people who do not have a chronic illness,

I have three things I wish you to know:

1. You don’t want to know what it feels like to be chronically ill, but it’s bad

When you ask me “How are you?”, I have no answer. I could say, thanks for asking, but I am, as usual, feeling like a piece of shit that is stuck on someone’s shoe and it keeps getting dragged out of the house and trodden on again and again, even though it would just like to get scraped off the shoe and thrown back into the bed of shit from whence it came. But I actually say something like “I’m here” because that is true, I am here, and for that I am grateful and happy, as every day out is a success.

I cheer in my head when I make it to work, every day. Please be happy that I am there too. I have so many symptoms I might seem vague or ditzy or short with others, but I am still me inside, trying to subsist with this (these) awful illnesses.

2. Take your cue from me how to act

Yes, I am limping. Yes, I am in pain. No, don’t give me sympathy. This is normal for me. I’d love a drink though, if you’re up, because you have no idea how hard, how much pain and stiffness I have to beat, in order to get up from my seat and walk a few steps to get a drink. Small things please me, a drink that I did not have to get myself, it’s a winner.

If I’m pretending to be ok then pretend along with me, just act normal. Even if you know more than most about me. Let’s just get on with life hey, chronic illness or no chronic illness. But if I’m looking beat, if I’m propping myself against a door frame and rubbing my head or my eyes or my arms or stretching my feet, please ask if I’m ok. That’s nice to hear sometimes, especially if only to give me an opportunity to vent my frustration. I may need something and you might be there just at the right time.

3. I am happy with the small stuff

As mentioned earlier, small gestures mean a lot to me. Because I struggle with so many ordinary tasks and because my life is filled with uncontrolled pain and fatigue, I have learnt to slow down to notice the small details of life, the natural wonders around us, and I love them. You might even feel jealous that a heightened level of appreciation and happiness has opened up to me because if my illness. There is something good at least possible from the arrival of this unwanted invader into my life.

We with chronic illnesses know how precious every day and every special event is because it takes us so much effort to attend, but we still do, because we want to live our lives. We want to live and enjoy life regardless of the obstacles and challenges we have to face.

Try to slow down too and enjoy your life. Or it will be gone in front of your eyes so fast.

Thank you for taking the time to read my thoughts.

Lisa.