To My Parents After I Was Recently Diagnosed With a Chronic Illness

I know it’s hard for you to see the child you’ve cared for facing challenges and to know there’s not much — if anything — you can do to help. I know you believe you’re doing all you can to make my new way of life just a little bit easier.

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I appreciate the early-morning starts and long drives to physiotherapy. I appreciate you’re willing to drive three hours just for a 20-minute doctor’s appointment, and I thank you for the hot water bottles and hugs you offer on bad pain days.

I love you for your optimism, for your faith in doctors that I’ve already begun to lose faith in and for your belief that my condition can dramatically improve. Please know that I’m not depressed and/or being pessimistic when I contradict your beliefs — I’m being realistic.

Many doctors aren’t knowledgeable about my condition, and some dismiss it out of hand. I know I can improve my quality of life with assistive devices (like splints and braces and, yes, even my cane), physio and pain management, but that doesn’t mean it’ll go away. These things are about managing my illness, not curing it. Acknowledge that.

When you say things like, “Focus on what you can do, not what you can’t” and “You rule your disability, your disability doesn’t rule you,” you don’t see that what you appear to mean, at least to me, is “The only disability is a bad attitude.” No amount of positive thinking is going to cure me. I am not “reliant” on my assistive devices, they enable me to do more than I could do otherwise. They don’t limit me, they empower me. Accept that.

And finally, please don’t praise me when I push myself too far for you. I would have been proud of those extra hundred yards I walked, too, but I ended up paying for it later as my pain levels rose from a 5 to an 8. I know I have a habit of pushing myself too hard and pretending I can do more than I can or that my pain levels are lower than they are.

Please help me look out for myself. Acknowledge that my abilities vary from week to week, day to day and even hour to hour. Ask if I’m comfortable with doing a task or offer to help if I appear to be struggling.

Above all, this illness and my ways of coping with it don’t make me weak. I am #spooniestrong.

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