I feel terrible that my spouse has to deal with my short fuse, when I'm hurting. I am JUST beginning to accept my RA. I have terrible downs, (I am so used to be lil miss independant and I used to be VERY active) I get extremely tired but I have 2 young boys to look after and take care of, so most days I must truge through. Those days are the hardest. I worry A LOT about what the future holds for my 8 and 1 year old. I feel that my spouse doesnt realize what pain my body is going through, and the things I worry about, i want him to understand but i dont know how to go about it. He too goes through a lot though, he has made a great accomplishment of controlling his DM and leading a healthier life. (I see that and I am proud of him) It feels like to me, when my flares come about...he distances himself, he keeps himself busy and out of the house. Please help me to help him understand. Any advice would be greatly appreciated.
Q: I have RA, my spouse gets the raw end of the bad times. How can I help him understand?
A chronic disease can put a real strain on a relationship and a condition that involves chronic pain can put even more strain on it. As you've noticed, pain makes you irritable and not as able to handle what you used to sail through, while at the same time needing a little bit of extra support. However, since when we're in that position, we often resemble a porcupine, people tend to stay away until we've relaxed a bit. What may also factor into this is a gender difference in coping techniques. I've noticed that when women are in pain they need more support and when women notice that somebody is in pain they come towards that person to offer support. Men, on the other hand, often seem to want to be alone and soldier through things on their own and because that's what they would prefer, they therefore give you space while you're tense. It can take some time to teach your partner that you need them to come towards you instead of giving you space.
In my latest post, I wrote about love and sex with RA - you can read more here. One of the things I mentioned in that post is that communication is key. You need to communicate that you're having a bad day so your partner knows that if you're a bit snappish, he shouldn't take it personally. As well, at the times when you perhaps don't realize that you're snapping, if your partner can find a way to say "having a bad day, honey?", it serves as a loving reminder that you're starting to resemble Cruella Deville. It becomes a sort of verbal hug, which makes it easier for you to relax a little. The best teaching method is positive reinforcement - telling him how proud you are of him for his accomplishments with his health will make him feel loved and may get him to reciprocate. The more the two of you communicate your loving and caring for each other, the more likely you are to continue the dialogue about health and how you're both reacting to it and when you do that, you work together to cope instead of
separately.
You may also consider getting some counseling - adjusting to a chronic diagnoses and the impact on your independence can be incredibly difficult, not just for you, but for the family unit as well. Speaking to a counselor may help not just you to accept and cope cope with your disease, open the lines of communication within your marriage to talk about something that is scary to both you and your husband, but it may also give you tools for helping your kids to understand what's going on.
I know how you feel. I actually didn't really let anyone know about me until the last few years. I have had RA since I was two & just got diagnosed with Osteoporosis and been through 3 surgery's since I was 17. The best way is just sit him down, grab some info on RA and explain. If he doesn't know it takes awhile for you to get moving in the morning, or putting on socks & shoes etc. (mine actually helps with this now) then he will never understand. Be honest with him! I am THE most independent person ever, I have a very demanding career and such, but there comes a time when you need to share. There are days when I just can't do certain things and I get so mad at myself and take it out on him... totally not fair but reality. Saying sorry only goes so far, so if you know you are having a rough day, tell him. He will be happier to know that you need his support than you just getting frustrated and taking it out on him. Trust me, it gets better! I was in denile for 10 yrs. I always thought I would be fine, but I just had my 3rd surgery on my knee and I am recovering now. Its a reality check, but well worth it! Good Luck!
Sometimes, it just takes time. I noticed that with my husband. He didn't understand. I had a high tolerance to pain but lately, it's just getting to be to much. He is understanding more and more. Especially when I have flares and he sees the swelling and such. Give it some time and talk, talk, talk. He will understand.
I so understand how you feel. I've had lots of anxiety about finding ways to help my husband understand what my life is like. He is amazingly supportive, but isn't the introspective type at all (unlike me), and talking about anything emotional makes him deeply uncomfortable, and sometimes that discomfort will make him get angry when he really doesn't mean to. I know that he worries about me all the time, and i hate feeling like such a burden to him.
What's been helpful to me is to actually study his style of communicating, rather than being stubbornly attached to my own (which is quite different from his). I've learned to have quick, short talks, pointing out some specific difficulty as he can see it happening. and I'm careful not to make what I say sound like complaining. (I don't see anything wrong with a little honest complaining, as long as you're not addicted to ti, but it makes him very nervous.)
He is someone who needs to feel useful -- he can't hear about a problem without wanting to solve it, or at least to help. So, like someone else said, I always thank him when does something right. I thank him everyday, and tell him how important his understanding is to me. I tell him that no one who doesn't have this disease can fully understand what it feels like, so he shouldn't feel guilty when he gets tired of hearing or thinking about it.
Sometimes I'll just jump into a quick talk by saying something like, in a light tone, honey, here's something i need you to understand, it means a lot to me. Then a brief, clear description -- something like showing him how I can't wash the dishes anymore because my hands won't grip. He can see it, and I'll just say, I'm not complaining, it's just the way things are now, but it makes me feel so much better to have you understand. He wants to DO something, so i tell him that by understanding my particular difficulties, he IS doing something, and it's important.
I tell him in particular that his understanding makes the pain more bearable. I tell him that he is my best friend, my best support, and i thank him for listening. Anytime I can inject a little humor it's a huge help. I make a little fun of myself for needing to talk about everything...and of him for always wanting to move on and not "dwell on the problem."
It's not perfect. We're very different. But he has stuck by me, truly, through thick and thin, and he really is there for me. I'm also learning that we don't always have to be in perfect sinc. He's irritating and hard to get through to sometimes, but actually, he's taught me what real love is all about.
I wish you lots of luck. It takes patience, and faith in the reality of your connection. if you trust that your husband is there, that he loves you in whatever his particular style is -- keeping in mind that men are just weird -- then pay attention to his style, what he hears and what he avoids. Give him information in small bits, a little at a time, and try to talk about plenty of things besides the disease -- don't let that become your only topic. That's healthier for both of you.
Just be patient, be kind, and try to let go of just a little of your attachment to having him acquire exact understanding of what life is like for you. he probably sees more than you think.
Best wishes,
Susan (Calamity Jane)
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