How can someone help their family and friends understand what they're going through?

I would print things out, including disease descriptions, articles, studies, and patient experiences + get a doctors letter. I would also write someone a letter about your life so they can have the words in front of them. It’s hard. Have a heart to heart. Stand your ground.

In my experience, communication has been key. Whether it is coming from me or a medical professional, being able to sit down and really explain the extent of the condition is extremely important. When you say your back hurts or you're tired, most people can relate, but what they can't relate to (and usually don't understand) is the fact that it's WAY more than that. It's a pain that cannot be understood unless one is going through it themselves. Because of covid and restrictions in doctors offices, I went as far as to voice record my conversations with my physician so family members could hear it from her directly.

Also, this website is 100% the best resource for those who comprehend best by reading others experiences. When I first started writing articles, I would first email them to my husband. I found that for whatever reason, I was able to convey my feelings better through writing than through talking about it. He said it was a huge eye-opener for him and I've heard the same from other family members who have visited the site! So write a letter, sit down around a table and answer questions, or even bring someone along to an appointment. Those are all really great ways to help others understand what you're going through.

I just got diagnosed yesterday I am 54 and all I know in my late 30’s I started to hurt now and then and I have been told by friends, family, coworkers and you name it either; you are to young to feel

I know knowing my symptoms feel I’ve had AS since my late 40’s or earlier. No one ever diagnosed my issues just gave me pain killers. So after seeing a Rheumatologist they immediately knew and blood work confirmed. So I freaked out and thought my life was over and retirement will be like my mom with all her ailments so no traveling or gardening. So now my situation with AS is my family just figure I’m Wonder Woman . I’m 62 and work through the pain and fatigue. I have always been the OCD mom with nothing to keep me down. I do all in the home, yard, and pool whatever needs to be done . I’ve enabled my family and now I need them to understand my life now. Which means I’m fatigued, never out of back pain even after surgery and an internal stimulator in my back. Don’t sleep well and leg cramps all the time. I just have an I don’t care about dishes and garbage and everything I used to love to do is not possible. I feel like I’m in a fog and can’t concentrate to do my crafts or anything I loved to do to relax me. The issue is my family has never had to do anything. So I still work and I need to quit or at least go part time but after 45 years of marriage my husband says I should work till he retires in Jan 2022. My money is free and clear so I save for our retirement home. I’m just struggling. But I keep going because I can’t just sit all day. I do what I can and I’m now on ENBREL 50 mg once a week injection. It does help but I have flare ups more often because I don’t listen to my body I keep pushing myself to keep moving. My hopes are my family will understand in the meantime my home is a mess, the pool gets cleaned once a week and I work. My doctor says I can work so it is what it is.