Spondylitis Association of America Forums General Discussion Young Adults - The 20-Something Club Dealing with doubters.

There is some merit to the question, "Have you been exercising enough?" since exercise really and truly helps with our disease, as hard as it is, but that may not be the nature of their questioning.

It sounds like your family members are too afraid to try the medications themselves and aren't respecting your right to guide your own medical care. It's probably time to tell them that while you understand their concern, they need to butt out if they're only going to offer negative "advice".

I am sorry to hear about your issues with your dad. Obviously the relationship means a lot to you, and it has to hurt that he choses not to believe. I agree with others that he may be scared the disease will be an excuse for you to become and addict or abuse substances like your mom. Have you looked to see if there's a support group in your area? Also speaking to a therapist wouldn't be a terrible idea, they have a way of really putting things into perspective and help you work all this out. I am fortunate to have family that believes since they also have different conditions that are similar (my mom has Sjogren's). He will believe one day, this would just be a topic I avoid with him for now, you can vent here. :-)

It is so frustrating to have your core support structure question your integrity. I have been going over this with my parents for years. But now that I am a parent I look at it a little different. I will feel so guilty if my daughter gets AS or lupus or any of the other hundreds of autoimmune diseases because a piece of it will come from my really crappy genetics. It may be that he is denying it because he feels guilty. I know it sounds crazy and you are probably grateful most days that he is your dad and you are here. Sometimes I think you have to step into their shoes. No one likes to see another person in pain. I think it is hardest on our parents who just want to fix it. They cannot feel what you are feeling and they cannot imagine what it feels like. I know with my mom I had to finally say this is not in my head. This is not fun. This is not going away. I need you to be my cheerleader which will include listening to me whine occasionally. My mom has gotten much better. I know last friday when I was exhausted from trying to prepare for easter and starting new PT exercises and still had to go take my Enbrel shot that I broke down crying it was amazing to have her hug me and know that it was just a hard day and the next day I would have to get up and change my attitude and go into another day. Which is so much easier to say than do. I was so grateful that she looked at me and said it was ok to be frustrated. So keep trying to communicate. And know that if he never gets it, it is because of his feelings, not anything you did. So hang in there.

I cannot believe so many of you are through the same things with family. I knew I wasn't the only one, but I didn't know it was this common. I just don't know how someone who is supposed to love you can treat you that way.

I have been incredibly lucky with the best mother. I think every sick person needs a mom like her. But my dad totally flipped out. Since he is very smart and a scientist, he thought he knew everything. He seemed to get mad when I would say I was in pain so I tried to hide it. He was against all medicine and my mom and I had to do everything without him because he acted so awful to us. However, he thought we were conspiring against him. He never wanted to come to my doctor appointments and when he did he acted terribly. But he turned it around on us like we didn't let him come with us and make decisions. He told me it was in my head and wouldn't talk to me when I had to quit school. He acted like I was a drug addict when I needed Fentanyl (and I am as far from being addicted or mentally dependent as possible). It was terrible because he spread all these lies to my extended family. They have been awful to me and we used to be close too. I just don't know how you treat someone sick like it's their fault. They never acknowledge my illness or ask how I'm doing now.

It was incredibly hurtful because I was always so close to my dad. I had the happiest family. Needless to say this led to my parents divorcing after 34 years of the best marriage I have ever seen. I often think how much happier my life would be if my parents were still together. We had so much fun and now I don't see my dad much since he moved away. They have both gotten remarried and settled with the crappiest spouses. They still love each other, but my dad just can't make it work. I truly don't know how my mom survived it.

There is hope for all of you going through it though. It just may take a while to get better. After all that, my dad now believes me. He is sweet to me, but still doesn't truly understand. I worked very hard with a therapist for many years learning how to get a voice and stick up for myself. I have accepted that this will be as good as it gets and I'm lucky to still have a relationship with my dad. I just wish we could do all the things we used to do together. We were really good athletes and played so many sports together. Now I can't do anything active (exercise just seems to make me worse for some reason). I am sad that I don't make my dad proud anymore. He loved my athletic ability and good grades. But I can't do anything about that so I have to accept it. I think all families have issues and it's probably especially hard for dads because they feel like it's their job to fix it and they can't. Good luck everyone.