Best friends know everything. Sometimes they know things about us that we don’t even know about ourselves. But after we are diagnosed with a chronic illness, that friend can become more like a stranger if we don’t tear the plastic off and be real with them. Here are six truths I should have shared with my best friend years ago:
1. “How are you feeling?” is a complicated question. And the answer is probably more than you want to hear most days. I desperately want someone to understand, but the story is long and may be boring. If you really want to know the answer, ask when you have time and opportunity to fully grasp what’s going on. But please, never stop asking.
2. I don’t want to complain because it would define me. This is forever. So sometimes I mumble “OK,” to the question above. That probably means I am holding it together. I want to be seen as a positive person. Some days I carry pain and fatigue that others wouldn’t classify as “OK,” but that is my reality. Though it might be different from your standard, I am struggling to be more than my disease every single day, so I suppress complaints. Otherwise, they would take over my life.
3. “Just OK” is a victory. And I am more than OK with that. In my fight for normalcy, I count “OK” in the win category. Let that be good enough. Otherwise, it feels like a defeat.
4. I will pay for all the “normal-looking” days. Just because I looked and acted like my old self yesterday doesn’t mean I’m “over it.” It usually means I will be on the couch for the next couple of days. That is often the rhythm and it works. But it can look strange (or suspicious) from the outside.
5. “You look great” is a double-edged sword. I work hard to look and function just like you in the short term, but I never want you to forget that I’m not. I still need your understanding and grace even when (especially when) it looks like I don’t.
6. Above all, because of everything I’ve shared, don’t avoid me. Keep inviting me even when I decline, keep calling me even when I don’t answer, keep sending me recipes I can’t eat. I want to experience “normal” life through you as much as I can. Being my friend and supporter is not an easy job and I know it. I’m not sure I could do it myself.