Does anyone have any recommendations of sites to go to that explain to a spouse/partner what sorts of things to expect when a loved one is diagnosed with PsA? I think my husband isn't really grasping what this is like for me. He keeps expecting it to go away and always seems surprised when he asks how I feel and I tell him I'm in pain. He doesn't 'say' so, but I believe he thinks I'm exaggerating. If he could read some literature about the condition from 'experts' (who are not me), maybe the lightbulb will go on. Thank you.
I recently downloaded a book from amazon that Seenie recommended. She has a link on her blog. Its a little sciency but so far, so good. There are a number of reputable websites to visit, and some are actually written in plain English! The Mayo Clinic is good also the National Psoriasis Foundation. I listed the links for you. http://www.mayoclinic.com/health/psoriatic-arthritis/DS00476
You could ask him to look at this site. There is a lot of good information here. Bookmark some discussions and ask him to read them. Afterward, you two can talk about it. There is also a lot of support here for spouses, and he will need support and advice too. You are new to this and so is your husband, it would be a good thing to research it together. Read as much as you can about the condition itself, the treatments including drugs, therapy and exercise,additional health risks, pain management, etc… It’s a huge help to have a partner in this. Then you have someone to talk to, share ideas with, to help you when you need it, and to share your frustration.
In a perfect world, he will be open to exploring this with you, and he will want to learn about PsA. It is important that you two are on the same page with all of this. If he is not open to learning, I would sit him down and have a “Come to Jesus” talk with him. (gotta love the way county grandmas talk!) lay out what you said here. Then Let him know that you have a chronic, autoimmune disease for which there is no know cure. This disease can be incredibly painful and cause permanent joint damage and disability. It increases you risk for heart disease and diabetes. Many patients will need at least one joint surgery in their lifetime. The medications that work the best are immunosuppressants. This is not your grandma’s arthritis. It doesn’t feel better when you take two Aleve. Many people find it difficult to find just the right combination of medications and during that time, when their disease is out of control, many patients have difficulty going to work, helping around the house, and maintaining their usual level of function. Use me as an example if you’d like. I went from 60 hours a week in a busy DC metro area ER to 40 hours a week at a desk job in an outpatient center, and now I am on short term disability while trying to find a combination of drugs that will alleviate the constant pain that I have. I went back to work for 3 weeks during this most recent episode and was so proud when I worked 24 hours in one week.
He has to understand that he is your partner in this; it will effect both of you. What I suggested above might be a little over the top for you, and that is totally fine. I am at a place in my disease where I have totally lost all patience with people who dismiss my condition.
Hey Renee, I've typed about ten different responses but, keep hitting delete.
I have taken Enbrel for ten years but, I've been able to hide/ignore/act normal untill the past couple years. My wife knows how much I hurt and more importantly how the FATIGUE kills me! BUT, she (or anyone else) will ever know exactly how it is.
It's important to make sure he knows the difference between RA and PSA. The constant fatigue, the constant crushing feeling in your joints, the emotional stress and feelings of inadequacy or failure.
You have to talk about it when you feel bad or can't do something the way (or at all) you used to. Don't expect people to just get it. I have it and I'm just now accepting it myself. Just keep explaining things to him as you realize them and he will too.
This is just what I needed. I am taking my youngest child to a counselor to help her with the new me. I have been racking my brain on how to explain my condition to the doctor. I now know what to say. Thanks!
Oh by the way my family does not get it even with me giving them lots of information. They never will, they are in denial wishing it wasn’t so. Maybe one day!