What I Wish I Could Tell My Boss About My Undiagnosed Chronic Illness
I’m sorry I haven’t been honest with you about my health. I know that you’re trying to support me, you’re trying to help, and I really appreciate that. I don’t know what to tell you. I wish there were ways you could help, but I’m not sure there are.
At this point, I don’t know what’s wrong with me. I don’t know if this is something that can be easily fixed with medication or another treatment.
I don’t know when I’ll have answers for you. Yes, I could tell you any of the previous diagnoses which were used to explain some of these symptoms when they’ve happened before, but I don’t know how much that would help. You shouldn’t need a name of an illness to be ready to help me. I don’t know if I’ll spend my next few days or weeks seeing doctors and specialists to get answers. I’ve done that before. I have many specialists I’m more comfortable with at home, but that’s halfway across the country. I have already been to two doctors this time, and they don’t have answers.
I don’t know how long this will last. I might be better in a week, or this might be something we’re dealing with for the rest of my time here. I know that doesn’t make it easy. It’s one thing to reschedule a meeting if I might feel better next week; it’s much harder to do when I don’t know when I’ll be able to go to the meeting.
I don’t want to have to prove to you how sick I am, but I will if I need to. The last time this happened, after three months of trying to get a diagnosis so I could get help from my professors, my doctor diagnosed me with a concussion. We both knew I never hit my head, but we also knew that I needed time if I had any chance of finishing the semester. A concussion covered some of my symptoms, and we hoped it would give me time to recover. I don’t want to go through any of that process again. This time, I do have formal academic accommodations because of my chronic illnesses, but I hope I don’t have to use them. You say that you want to be supportive, and I hope that’s true. We can involve the administration if we have to, but it’s so much less work if we don’t.
I appreciate it when you ask questions, and when you offer to help. Sometimes even just telling someone that I’m not doing OK can be endlessly helpful. But sometimes I’m not ready to do that. And I really appreciate that you accept when I don’t have answers.
I need you to know that I’m scared. It’s terrifying to get out of bed and not know if you’ll faint before you get to the kitchen. It’s terrible having pain that you don’t know if or when it’ll go away. So yes, I might seem distant or distracted during our meetings. I might not care about some things as much as I used to. But I’m trying.
I know answers would be helpful, and believe me, I feel the same way. I just don’t know yet. In the meantime, time and space and patience would be the most helpful things you could offer. I need time to rest, time to see the doctors I want to see, time to learn what works for me. I need space to experiment with different treatments. And I need patience. I still want to work on my projects as much as I can. I still want to plan regular meetings because there are things we need to discuss. But I might have to cancel them last minute, and I might show up unprepared. This semester might not look how you imagined it would, but I will do my best to finish what needs to be done.
This story originally appeared on Purple Garlic.
Getty image by Nadzeya_Dzivakova.