Waking up every day is like a game of “What’s going to ache today?” It takes me a few minutes every morning to assess my body, my pain levels, and where the pain is coming from. Even if I had an achey shoulder for the last two days, I can wake up with knees that ache today, and a shoulder that feels perfectly fine. The one constant from day to day is my hips. Sometimes they don’t hurt much, sometimes the pain is so bad I’m not sure how to get out of bed in the morning, but there is almost always some pain in my hips.
I’ve been thinking a lot lately about how your environment can determine, to some extent, how you handle a chronic illness. I grew up with two parents who have always had some kind of illness. My dad has reactive arthritis, and my mom has multiple problems because she had cancer twice as a teenager. So I’m used to being around people who maybe can’t do as much. It’s been my life for the last ten years to take care of my little sister as much as possible because my parents can’t do as much. My dad hasn’t been able to drive since before she was born. So when I was diagnosed, I was already prepared to handle it. I immediately started forming a plan, and I knew I could live a rich life even with this diagnosis.
My boyfriend, however, having grown up with two healthy parents, freaked out. He was worried I would eventually go legally blind, like my dad (my dad is only legally blind because the doctors treated him wrong). He’s worried about me being able to walk (apparently, limping through the hospital going slowly so my hip doesn’t lock up doesn’t actually count as walking. I think it’s walking as long as I’m moving forward on my own feet under my own power). He doesn’t know what to do, he doesn’t know how to help, and he is freaking out about me probably being like this for the rest of my life. I realized it scares him so much because he has never really had to deal with this kind of thing before. In my house, illness is constant. Mom has diabetes, high blood pressure, high heart rate, a history of cancer, had 2 separate mastectomies. My dad has glaucoma, is legally blind, often aches in his back and hips. The worst at my boyfriend’s house is his mom’s allergies. He doesn’t know what to do with me.
Realizing this has helped a lot. Now I know I need to explain everything to him. I need to tell him the things I think of as being obvious. And it’s helped. He’s understanding more. And it’s better for us when I can remember to explain things so he understands. I’m not saying that you should always explain everything to everyone; strangers don’t have any right to question you about how you feel or why you’re limping. I do think though that it helps me personally to keep in mind that my boyfriend does need things explained so I don’t assume he knows what I’m going through and that he understands everything without me having to tell him. I won’t be extending this courtesy to everyone, but for him, I don’t mind doing it.