10 Things I, as your friend with Chronic Lyme, want you to know...

1. I’m sick, but I’m still a person. I still have feelings, I still know when you’re leaving me out, and I still can feel forgotten. I can still hear you talking about me. I still see the stares when I go into public with my port showing. I can sense your agitation when I can't do what you want me to do. I notice when you don't talk to me for extended periods of time after I have to cancel plans or something. I'm sick, I’m not stupid. 

2. I’m not just going to be better in the morning. I’m not going to suddenly be healthy. This is a process, a journey, a long long road. I can’t just take a pill and be okay. I can’t just take a nap and wake up healthy. Trust me, if I could, I would have done it a long time ago.

3. I still want to be included. I may not be able to do all of the things you can do, but what would be so wrong with doing something simple—something that I can do with you? I can’t go out and drink every night, I can’t do a whole lot of physical activity, and I can’t always remember things…but, I still want to be included. Let’s just watch a movie.

4. The worst thing you can say to me is “oh, but you look good.” I don’t look good. And, even on the rare days that I do look “good,” that doesn’t mean my disease is gone. It doesn't make me feel better to tell me that I look good when I don't--I see through it. Just because you can’t see it, doesn't mean it’s not there. By any means.

5. I don’t want to get out of bed in the morning. Ever. But, I do it. I get up every single day, and I fight through every second until I can be back in my bed again at night. So, please don’t tell me that all I do is sleep. Sleeping is the only way that I can get through the moments that I’m awake. If every step you took was painful, and every turn of your head made you nauseous, you would want to be in your bed too, I think. 

6. Just because I did something yesterday, it doesn't mean I’m going to be able to do it today. Actually, chances are, if I did something yesterday, I’m not going to be able to do it again for a few days. And, I know that the uncertainty of what I’m going to be able to do every day doesn’t make sense to you. Trust me, it doesn’t make sense to me, either.

7. I really do have to take my medicine. And no, I can’t just take it later. I can’t just take it tomorrow instead. I can’t just skip it. I can’t stay out longer and just take it when I get home. On the days that I’ve chosen to get off track with my medicine, I’ve paid for it for the next few days. It’s not worth it, and I won’t do it.

8. Just because you’ve had a cold before, doesn’t mean you understand. Just because you’ve thrown up before doesn’t mean you understand the constant nausea. Just because you’ve ridden on a spinny ride at the fair doesn’t mean that you understand being dizzy a majority of the day. Just because you’ve had a headache doesn’t mean that you understand the headache that I’ve had every day for three years. I appreciate that you’re trying, but I don’t need your sympathy.

9. Yes, I have been sick a long time. Yes, you would think I should be getting better by now. But, I’m not. I’m not better yet. And, I don’t know when I will be. I may never be better. But, bottom line is, I’m trying. I’m giving it all that I’ve got. And, I don’t appreciate it when you tell me how to make myself better. 

10. I can’t do this alone. I still need my friends. I still need my family. I still need people to be there for me. I need people that are going to stick by me, even on the worst days. I need people that are going to take a second and think about how I may be feeling, and what I may be going through. I need people that will take a second out of their lives, and give that second to me. And I need people to still need me. I can still listen and I still care about you. We all struggle, we all are facing our own battles, and I will never leave you to face yours alone…so please don’t make me face mine alone, either.