I realize it is hard on your as friend, family member, caregiver, employer and co-worker, dealing with an autoimmune patient in your life. I see it from your side, I really do. I once was healthy and knew someone like myself. I was judgmental, even if only in silence.
Now that I am chronically ill, I see both sides. I would like you to know:
1. I do not like to disappoint you. I really hate disappointing myself;
2. I am doing all I can to manage. Sometimes, this is not enough;
3. Even though I have good days, do not look sick and am perpetually cheerful, I am in physical pain every day;
4. Every day I learn I am no longer able to do something I used to. This makes me sad;
5. I cannot predict when I will be too sick to spend time with you or work. As a person who plans out almost everything, this is frustrating for me, too;
6. What you say hurts me, what you say nonverbally with your expression hurts me and this stress usually brings on more symptoms;
7. I would rather have my "old life" back, but this is the cross I am given. There is just no way around it;
8. Millions of Americans have my disease. Millions more will develop it. Therefore, I am your grandmother, your aunt, your daughter, your friend. Please treat me as you would have others treat them; and
9. I forgive you.
Search #HAWMC to read the open letters of other e-health activists. Until tomorrow.