1: Having people honestly believe you are in pain. Doctors don’t believe you half the time so it is hard to make family and friends believe you.

2: The fact that it takes years to be diagnosed. I suffered for 32 yrs before being told what was wrong with me. I had gone to over 70 specialist before stumbling across my diagnoses.

3: Knowing that once the damage of being fused is done there is no going back or fixing it.

4: The hardest thing actually for me is the uncaring attitude of most of the doctors I have seen.

5: Dealing sometimes with the guilt of watching the doctor I have now who is close to my age struggle with the fact he is never going to fix me. After much honest discussion i simply told him. I am not looking to be fixed. I am looking for a doctor who is honest with me, shows me compassion and allows me to be educated in my own health care and realize it is my life to live and my pain to handle.

6: The thoughtless and uncaring remarks made by friends and family.

7: The lack of concern because you don’t look sick.

8: The guilt that it brings on for not being able to carry your share of the load, and having to depend on help.

9: The struggles of finding the medicines that work for you.

10: Remembering that your neck or back doesn’t bend or move at all.

11: Remembering you have trouble swallowing and then dealing with the pain for having to chew food so long.

12: Not playing the what IF game. The word If should not even exist.  It either is or it isn’t. It either happened or it didn’t.

13: Controlling the rage and bitterness that some times builds inside of me

14: Remember to be thankful for what I have been blessed with in the past, present and future.

15: That i am a person with Ankylosing Spondylitis …. not that I am Ankylosing Spondylitis.

16: That even the research questions on our disease doesn’t honestly fit our disease. This disease is not a yes or no or it is or isn’t disease . The questions should be designed to fit each disease.

17: Getting acceptance from yourself, doctor, family, friends and the public.

18: Struggling with simple things such as picking something up off the floor, clipping your toe nails, reading a book, so many simple things become a struggle.

19: Not knowing the future but I remind myself healthy or not no one knows their future.

20: Never being able to lose that brave front….

21: Learning to live with severe pain even when you feel good and having good days.

22: Knowing the research and the cure will more than likely not benefit you at all.

23: Knowing there is a possibility that someone you love and want to protect may be in your shoes one day.

24: Taking ambien every night not because i can’t sleep but because it is too painful to lay down.

25: Surgeries, physical therapy. Doctors you see sometimes more than family.

26: Not being able to take away the pain of the people who share your disease and you have come to care for them.

27: Forgiving your self for being human Thank you Sean Ryder for giving me that gift!

28: To learn how to spell it and say it correctly.

29: That your own body is attacking it self.

30: Being able to touch or be touched in human closeness with out pain. Simple hugs hurt.

Originally written in 2009