It took several years to get to the rheumatologist after being bounced around from my family physician to an orthopedic surgeon, etc. I have started on methotresate
(about 3 months). I am begining to notice that I am able to move much better and pain is decreased. Yesterday, I went to the races with my husband. Today, I am so tired I can't function. My husband doesn't comprehend this. How can I get him to understand? I need his support.
Thanks,
Hi, Sarah. Getting family to understand a chronic illness without totally freaking them out can be a challenge. My husband is supportive, but he did not really have the full picture of my situation, so to speak. So......I am taking baby steps in that direction so he doesn't get overwhelmed. He is not one to go on the internet and look these things up on his own, and he likes to ignore medical "stuff". I found a one page description of Erosive Inflammatory Arthritis, which is my condition, and printed it off and left it on the coffee table. He saw it there and asked me what it was, so I told him it was an explanation of what the doctor says I have. He picked it up and read it. It was like a light bulb coming on for him. I think he actually said, "Wow". I also have fibro, but he has an idea of what that means from the ads on TV. LOL Just a suggestion. We don't want to overwhelm our family members. We have to remember where they are coming from and bring them gently to an understanding of our condition(s). Wishing you well. V
Hi Sarah,
Its great that you are seeing positive results with Methotrexate :) I have had RA for almost 7 years now and Methotrexate has been working well for me too :)
Now, about the way your body will keep going from being absolutely normal to "i don't even want to move" - it will happen a lot. Firstly, try to keep yourself calm, knnow that you will only get better. Second - be patient with him, it would be confusing for him, so give him some time and space to see what you are going through. Getting him to read some of the posts here can be a good start! Get him to explore RA Central!
I know it can be frustrating - I used to, still have, a hard time getting my dad to understand how I can be so different on different days! :) I have just learnt to laugh it off :)
Most of all - you stay calm and cheerful ( i know it is hard, but it works, trust me! )
Hi Sarah,
As a veteran RA'er (over 25 years of battle so far), I alway advocate education. The more we and our partners know about the disease the better prepared we are and the less scared and frustrated. Without educating ourselves we can't even begin to help those who love us to understand. You do have a head start. Your husband has been there for the ride so far. I will cross my fingers that he is an understanding, patient man. It is very difficult to convey to friends and family that we are in pain or feeling under the weather because our disease is invisible (except for swelling which meds can control.) and pain is subjectives. But basically communication is the key to a good marriage period much less learning to live with a chronic illness.
As a newbie to RA, you are just now learning how to adapt and live with your RA. Even after a billion years, I sometimes forget I can't go full force on my good days. I will end up putting myself down for a week if not more.
RA is all about trial and error. You and your husband are going to make a lot of mistakes along the way, just be prepared for the ups and downs of this roller coaster ride.
Here is a few article from the archives here on Healthcentral.com. It is a jumping off point. I will dig through my library to connect you with some books and websites to help.
http://www.healthcentral.com/chronic-pain/c/23153/112986/chronic-pain/2
http://www.healthcentral.com/rheumatoid-arthritis/c/80106/100689/11/2
http://www.cnn.com/2009/HEALTH/12/29/chronic.pain.relationship/index.html
This is just a drop in the bucket. The internet is also a great sourse. The Arthritis Foundation can also provide links for support groups and such. Many couples benefit from counseling during the first year or 2 after diagnoses.
I will get back with you with more info if you need it.
Ronie
its tough getting others to understand that sometimes you just cant do anything...My ma and sister have been supportive, my mom probably knows more about it than i do, my sister is so sweet whenever i have a flare up. however getting others to understand is a struggle. i have been having really bad flare ups lately, so i decided to join a support group. it helps when you talk to others who do not think you are crazy or just plain lazy. get your husband loads of infor and maybe he should join this site. the more people who understand what we go through the more support, the better!!!
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Ronie,
Thank you so much for the email-- so very helpful! I am still learning (obviously) about all of this, and what is happening with my body. I appreciate any resources you think are valuable and could pass along to me!
Sarah