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

Hi all.

I was wondering if anyone else has problems with parents or other family members not believing in your disease, diagnosis, or severity and how you deal with it. Over the course of my treatment and flares, my father has made it perfectly clear that he pretty much thinks I'm a hypochondriac and over-medicated. Most times I'm able to just ignore these things, but sometimes when I'm going through a really rough patch, it hurts me deeply. My Dad has pretty much always been my support system (my mom has been a substance abuser for years, so I don't look for anything from her). I've offered to take him to appointments, have him meet with my doctors, give him reading material, but none of that changes his mind. When I'm having a difficult time it really hurts and discourages me. I don't know how I can show him that I really am in constant pain. I don't take these medications because I want to, I take them to make it through a normal day...

Sorry for the major vent, but I'm sure that you can now tell this is one of the times I'm really hurting and wishing I had his support.

Do you live with him? Do you spend a lot of time around him? Because maybe he just needs to see how much pain you are in. I know that since I'm at school, and I dont visit home that often due to my crazy class/work schedual, my parents don't see me when I'm at my worst. Then even when I do go home I (for some stupid reason) put an act on and make it seem like everything is ok and thier are no problems. Its just some defense mechanism that I do to not seem like a marter or something. But than that causes them to not really understand the pain that I'm going through.

My girlfriend on the other hand, she is with me every day, she see's me wincing in pain to put on my shoes and brush my teeth, she see's me brought to tears from the pain more often than I would like. She truely can see tha pain that I'm in and understands it more than anyone else.

So maybe he just need to see you when your at your worst, give him a real sense of how hard it is to live your life and how with out the meds, it would be impossible.

You know, it occurs to me that maybe your dad reacts to your situation the way he does because of your mom. If she's a substance abuser, he may be afraid that you are going down that path too so is trying to minimize your symptoms because then you don't need meds. We do funny things to avoid being hurt again, even hurting those we love in the process.

Denial is a hallmark of substance abuse. Talk with someone who can help you begin to separate.

I am not an abuser. Thanks for the concern.

Ken, I have lived with my father and he's seen me in very rough times. I guess that's why I don't understand how he can't grasp this.

My parents haven't been together since I was two and my mother mainly abuses alcohol and marijuana, not narcotics, but I suppose that could be a factor.

Your father has a hard time grasping your condition in the same way he has a hard time grasping the abuse of drugs and alcohol by your mom it would appear. I do not think that you are abusing either. I believe it would be helpful for you to talk with someone/ Does that make sense to you?

Rachel,

My parents have been divorced now for 24 years. These last few weeks have been very difficult for me and as part of my mental healing and acceptance of this disease and I wanted to talk to my dad about what is going on with me health wise. We have an ok relationship that mainly focuses on our careers. So when I told him that I was going part time with work due to my illness he told me that he thought that this was all in my head. That it couldn’t be as bad as I was making it out to be and that I was just giving in to how I was feeling. He accused me of quitting a good career and choosing to focus on being sick.

I guess the reason for me sharing this with you is that I understand. I know how it can suck when a parent who is supposed to understand and offer compassion turns to you and thinks you are either making it up or have just giving into your disease. Flat out it hurts no question there!

The question I had to ask was where do I go from here? The answer for me is that it doesn’t matter what he believes because he isn’t living my life. I am. So I only share the little things and don’t go into details any more. It isn’t something that he can handle and I can’t handle his responses.

I agree with WhiteCell, it would be good for you to talk with someone about this and how to manage the relationship. Especially if he is the only parent who is involved in your life.

Take care of you!
Hugs
Mel

My mother is basically the same way.

she never really understood the severity of the disease and how much pain it brings. and even now that i am diagnosed and on the road to getting better, she has no interest in it. i think she just kind of wants to shut me out until i get better so she just can pretend it never happened. well she will get a rude awakening when she realizes that i am gonna be this way for life. the funny part is she asked the doctor that question and he point blank told her that i will be dealing with this for life. yet she still cannot talk to me about it or anything to do with me getting better other than the occasional "oh so now that you are started on treatment, your gonna be better right? how do you feel? are you ok now?" stuff like that.

its annoying and its frustrating but i look at it this way. she is probably just trying to cope with this the only way she knows hows and that is to shut me out completely. your dad on the other hand wants to make it out to be like you are giving into your diagnosis, like giving up instead of fighting it. even if you are taking meds, like you are supposed to be doing, he looks at that as a form of giving up. he, in his mind, wont be happy unless he sees you functioning without the help of medicine. its just a form of denial. my mom went through that phase also, where she thought i was making all my pain up and that i was just lazy or giving up. now that she accepted that my pain is real it hasnt gotten any better, she just moved onto another way of dealing with it.

its hard but i guess it all comes along with this wonderful disease we have. dealing with all the factors affected in our life.

Rachel,

You are not alone, when I first started having pain due to the AS no one in my family believed me. My mom thought I was making it up to get attention. When I would limp because of the pain in my hips, she would tell me to stop it. When I couldn't stand up straight anymore she threaten that if I did not get better I would have to have back surgury. She would ask me constatly "are you trying to stand straight," well duh I was trying, did she think I didn't want to stand straight, it was all I wanted to do.
When I could no longer move my hip, my sister thought I was being lazy. My grandma bribed me, telling me she would take me on vacation if I got better.
What people don't understand is that we are in real pain and we can not control the disease.

I am sorry that your dad doesn't believe you, it is bad enough to have the physical pain.

My parents believe I am pain, but they are against treatment. Even though my father is diagnosed with uspa and his mom has psoriatic arthritis, and they both have significant physical limitations, every time I go home, I hear comments like "you know those medications are dangerous." "Have you been exercising enough?" etc., etc.

I had a difficult time making myself take humira and methotrexate anyway and hope and pray I won't have any serious side effects. Whenever I go home, I still seem to jump on an emotional roller coaster and wonder if there might be a less risky way to handle the inflammation. After a few days of watching my father try to hide his pain and do things that cause him more pain, I realize that the medications are worth the risks for now.

I do wish I hadn't told them the medications I am on though. I think they feel needless guilt and worry too much about it all

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.