Most of us find that other people can be clueless about what it’s like to live with a chronic illness. It makes sense since this is invisible, unpredictable and often debilitating. It’s hard enough to explain this to your friends and family. It’s even more difficult to explain to co workers who only know you in a certain context and rely on your ability to do the work. You might want to share this list — or just repeating some of what’s here when it’s appropriate.
1. For most people, health, like the weather, is relatively unpredictable and there’s an element of luck. But living with chronic illness means that I face unpredictable health daily. It can change as quickly as the weather, often without warning. I find this difficult, constantly challenging and even demoralizing. But, I try very hard not to let this prevent me from delivering my best.
2. When I have to “slow down” or not show up because of chronic illness symptoms, it can mean that others have to pick up the pieces to keep things going. I appreciate that this can be frustrating for you. It is for me, also. Let’s just make sure we discuss what I can do to prevent my illness from becoming a burden to anyone.
3. I’m not looking for your pity or even your sympathy. I don’t feel sorry for myself and I don’t want you to feel sorry for me, either. But I do welcome empathy, such as, “I understand this is tough”. And once in a while, it’s really great to hear your encouragement, such as, “You do a great job with this” (but only if you mean it.)
4. I know it doesn’t seem to make sense, but I can feel terrible and look fine. When most people have the flu or even just a cold, they look sick. My symptoms, sometimes disabling, are usually invisible. I know it’s hard for others to understand this, especially when I look the same through it all. That’s why I’m often nervous about what others believe about my health and think about me. It might sound odd but when I hear, “You look so good!”, I wonder if you think I’m exaggerating my experience.
5. You probably think you’re being helpful when you tell me what I could do to get better. Your Aunt Gertrude, who went into remission with that special diet, or your friend, Phil, who got better when he stopped working – they’re not me. I promise you, if I want advice, I will ask for it. Just because I’m not healthy, it doesn’t mean I’m incapable of managing my life.