RA|QA Rheumatoid Arthritis Questions & Answers

Questiongraffax100 asks:

Although not confirmed, my wife has RA. She will receive that confirmation upon visiting the rheumatologist in December. I’ve subscribed to this blog so I both educate myself and try to understand this life-trial my wife will be entering. Is there any input on how a spouse can help?

Thanks for your question, and welcome to Rheumatoid Arthritis Guy! Let me just say that you’ve already taken a first big step, which is to start looking for RA information on websites and on blogs. This counts for a lot.

I am posting this question on my frontpage (and starting this new RA|QA feature, as I continue to get more questions that I can fully answer), in hopes that others can provide feedback as well. Best wishes to you and your wife!

Do you have your own question that you would like to ask here on RA|QA? Submit now!

9 Comments
9 comments
  1. Jackie says:

    Education and information about RA is key. Just be there to listen and offer support and input. I’m a very independent person, but it really helps when my husband at least acknowledges it when I’m having a bad day. I don’t want sympathy, but I do want understanding. Thoughtfulness means so much. For instance…drop her off at the store entrance before parking when she’s having pain issues..don’t when she’s not. Offer to go with her to her appointments if she seems anxious…sometimes it helps to have another set of ears. Remember that we don’t want to be a burden, so sometimes no means yes. For instance, my husband offered to stay home from a family reunion when I was in the midst of a bad flare. I said, “no, go on”…when I really meant “yes, please don’t leave me”. Even though I had a really horrible weekend, I couldn’t be mad at him because I had told him to go. Communication is important, especially now. I was expecting him to read my mind. You need to establish rules on this…no games allowed.

    I have no idea if this is the kind of advice you were looking for. What I can tell you is that you are taking the right steps. You have a rheumatologist,you are trying to educate yourself by seeking advice and support from others. Early treatment is so important to the management of this diagnosis. For the most part, I am doing very well. Many people would never know that I even have RA. It is manageable and doesn’t have to take over your life. Best wishes to you & your family!

  2. marianne hoynes says:

    Love your wife. Understand that her illness is physical, emotional and psychological. Dont neglect yourself. Chronic illness is hard on spouses, and getting support from a care giver group or something like that, might be really helpful down the line. Be a team, participate in her doctor appointments and treatment as much as she lets you. I should ask my husband to post here.

    He lets me know I’m still beautiful, when pain, skin rashes and weight gain make me feel ugly. He pays attention when I tell him I hurt. He looks up the side affects of my medications. He goes to the doc with me. He carries my bags on a bad day, and lets me carry my own when I have something to prove. He is there for me.

  3. Joye-Marie says:

    I totally agree with Jackie and Marianne. Be as involved as you can. My husband came with me to early doctor appointments but now I go on my own because I feel that I can cope with it. However, I always discuss new treatments, recommendations with him before trying anything new.

    He hates seeing me in pain, I know that’s a male thing. He will uncomplainingly (is that a word?) get out of bed in the night to get me a drink and pain relief if he knows I am awake and sore. He does housework when I can’t, but lets me get on with things when I can. He understands when I’m having a bad day and will urge me to rest without making me feel like a sick person.

    I guess what I am trying to say is unconditional love. You’re definitely on the right track by posting on this website. Good luck to you and your wife.

  4. Jules says:

    What these folks have said is very, very important. Be your wife’s partner. Understand that there are days when she is just not up to doing much of anything. Pitch in where you can- but don’t make it obvious.

    My husband steps in and shares the workload around here with me. He also sees that if the housework doesn’t get done today- the world won’t end. If you have children- help out with them and teach them compassion- they can help mom out too.

    Don’t treat her like she is disabled. There will be things she can’t do today that she will be able to do tomorrow, and there will be things that she won’t be able to ever again. It’s very hard to come to terms with but she will get there.

    The best thing my husband did for me-is a small thing but it means the world to me. We have a small dog who is the love of my life. She motivates me to get out and walk twice a day. When I began Enbrel- we found that it knocks me out on the day of the shot, so without complaint, without making a big deal of it, he started taking over her evening walks on that night so that I could go to bed very early. He cooks for himself that night, watches TV quietly downstairs and keeps her entertained and then takes her for her half hour walk at her normal time- all so I can crawl in bed by 6:30 and rest. He doesn’t make me feel guilty for “neglecting” either one of them, he doesn’t make me feel like he is doing me a favor- he just does it because he saw that I needed it. It’s the little things like that that mean the world.

    Good luck to you both!

  5. joshua121 says:

    My wife was diagnosed with R.A., Fibro, and Sjogrens all withing the last 3 or 4 years. I have to agree with everyone who has posted so far, and say that those are very good suggestions. One thing to remember is that when your partner has any auto-immune disease, then in a sense, the entire family has that disease. R.A. Sjogrens, Fibro, they are all, “fun for the whole family”. I guess what I’m trying to say is that you can never let your wife be alone in this trial that she is faced with. Take part in her treatment, her doctors appts, going to the pharmacy, helping her keep track of when she needs to go to the doctor, how much medication she has, and when she needs to refill it from the pharmacy, and when she needs to get the doctor to renew prescriptions, and above all when she just needs someone to listen to her.

    Being a man, my first instinct is to fix everything, and while most of the time that has served me fairly well, I can’t fix her condition (A fact that kills me) nor should I always try. Sometimes she just needs to tell me that her hands hurt, and she doesn’t always want me to offer some crazy remedy I think up, crazy remedies almost never help.

    So as not to make this thread 9 miles long I’ll only give one more suggestion, which I will illustrate with an analogy.
    If you are on a flight and you have your child sitting beside you on the plane, if the plane should go down, before the oxygen masks drop they will instruct you to put your own mask on first, before attempting to put the mask on the child. The reason for that, is because if you try to put the child’s mask on before you put on your own, you’ll likely pass out before you can, and then neither you or your child will be conscious. In the same sense, and Marianne pointed this out, you have to take care of yourself. Not just because you should, but because your wife is going to need you more than ever. And if you’re falling apart, how are you going to be there for her? I think the reason I feel so compelled to point this out is that I went down that road, and it doesn’t lead anywhere good.

    Finally don’t take on anything really stressful that you don’t have to until you and your wife are a little more adjusted to the new situation, for instance, if your a smoker wait until next year to quit.

    I hope some of that helps, and good luck to you and your wife. I hope that she can find a treatment that works for her, and you two can live happy lives.

    Joshua

  6. Rainbow Lucy says:

    My other half gets very depressed by the condition, and when that happens he doesn’t look after himself well – which makes it worse. That’s when, as a partner, I need to gently do what I can to make sure he eats well, takes some exercise, enjoys his hobbies on the days he feels able to and rests on the bad days. It is really hard to understand the pain when you don’t share it – you learn to recognise the symptoms and react to them without your partner having to tell you they have problems. All in all, just being there, understanding what you can about the condition and looking after yourself too will make a difference.

  7. Riotkat says:

    My husband is great. I am so proud & independent I refuse to ask anyone for help. We have been together for a long time now that he realizes when I need help and just does it. He took the day off to sit with me for my very 1st infusion, that meant the world to me I was NOT going to ask him

    Also I wish there was a support group for our spouses, partners, children, loved ones. A place to learn from each other and not feel alone. How to deal when I am exceptionally cranky. We have these, they should to

  8. khewitt says:

    I have to agree with everyone that has posted a comment about this subject. Myself, being a man with Ra, I tried hiding my bad days as much as I possibly could. I have posted several times in the marriage/relationship section. The hardest thing about my “superpower”, is that my wife has chose not to do any research on it and normally cant tell if im having a bad day or a good one. Through some encouraging words from our friends on this site, ive become more open about my condition and what i can and cant do. As much as i have opened up, she still doesnt seem to ake an interest in any type of research. Having said this, my biggest reccomendation is: Just be there for your wife. Listen, research and love her no matter what kind of day shes having. Knowing that you care and are there to help, are the best medicines we can get!

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