How to get your family to understand

This is not a how to guide. LOL This is a sincere question for those of you who have loving, supporting family members. The day I came home with a diagnosis and told my wife, the reply I got was, "I' not sure I signed on for this." Now, let me say that I have a very loving wife who would only had glimpses of having to take care of an invalid for the rest of her life. It was just as much a shock to her as it was to me. My question is how do you get your spouse, family, friends to understand that while you have this serious illness that you are going to be fighting it every step of the way. That you are going to push the limits of your pain threshhold, fatigue level, and physical abilities and you only need them to meet you half-way. Being tired does not mean you are being lazy! Hurting does not mean you are upset, angry, or in a fighting mood, it only means that you are holding on the best you can. If you have changed since the illness it does not always mean it is for the worst. Just as a person might lose their sight and go through a period of adapting to the new situation and learn the use of the other faculties to get by, so we must adjust, adapt, and learn to get by in different ways than before. Having to tell my wife I can't load animal feed at her store anymore because of the tendonitis in my elbows and feet has become to painful for me to endure was not easy for her or for me. I was always her strong, protective, does she feel the need to be protective of me when I am in this weakened condition? Changing roles in a family is hard on everyone but getting them to understand and accept the changes may be the hardest part. If you have any insight please drop me a line.

Hey Johnny,

I have gone through the same... I have been married for 13.5 years. I was officially diagnosed 13 years ago. I owned/operated a landscape company, fixed the cars, remodled the house---es, still cook all the meals (my wife doesn't cook), take care of the dog, the first to say let's party and the last to say let's go home.

What accidently worked for me was going about my life as best I could, not complaining, just doing whatever I could. Slowly, my wife realized that sometimes I got tired or I would chose to exclude myself from activities that I couldn't do. When I couldn't continue landscaping I chose an easier career. Things kinda fall in place. I always remind myself that being nice/happy/calm takes as much energy to be mad/mean/grumpy.

Just keep talking and sharing and things will fall in place for you.

Thanks, Robert. I am much like you. I never complain so when I tell someone I can't do something, what I mean is I want to do it but my body just can't anymore. I suffered for 8 years before going to the doctor and being diagnosed with psoriatic spondylitis. I could drug myself up and be as pleasant as a puppy but I'd be a total waste as a human being. I choose to take the road of minimal drugs, slower pace, and happier times with my loved ones. One friend asked me why I was so quiet at dinner one night. I asked him if he felt like talking when he had an abscessed tooth, recently. I then told him that's how I feel most everyday. I'm not being mean or rude, I'm just dealing with life as it now is. I assured him that down inside there was the same old gregarious Johnny who wanted to laugh and sing till hey closed the joint down, but that may be a thing of the past. He understood and was glad I was frank with him. He thought I was depressed. He wasn't sure how he would have handled that discussion but he could understand chronic pain.

Hi Johnny,

It's definitely difficult for us to get a handle on our disease, let alone our nearest and dearest.

I met my BF 3 years in April, and straight away I knew he was the one for me and he felt the same. I had had tendon issues for many years but went into a massive flare 6 months after we met and diagnosed with PsA. I had told him about my past baggage but found it difficult to explain how this disease may affect us as a couple (I'm in nursing so understood what might be in store for me) I get emotional when trying to explain how I feel, and my words often come out I wrote out how I felt, my fears at how I could decline, my fears of being a burden, my frustration and grief at not feeling like "me" any more, my determination to keep working, keep fighting, keep laughing. I gave it to him with both barrels and told him he could walk away because we both have complicated lives and who needs more grief........but he's still here. He knows I will ask for help if I need it, and understands if I ask for help I really NEED it.

I have always been independent, a bread winner the fixer upper, the do-er. I'm still HER but with some limitations. All I can say is communication is the key. Good luck x

Thanks Louis. I'll try! Communication has never been one of my strong points.

I'm also wondering if it may be tougher for men, when they are no longer strong. Although I had a really good giggle the other day. We were talking about what would happen when I have hand surgery, and my husband was saying that he could do the grocery shopping. That's the LEAST of my concerns right now. But he's in the right mindset, so we'll go with it.

It can be really hard to accept the changes in ourselves, and for a loved one it can be just as tough. You'll find some really good support here.