But like I had to remind him during some of his answers, this is a safe space!
I hope you guys enjoy reading my interview with my honey as much as I enjoyed asking him some of these questions.
K: I am awesome. Thoughts?
T: I agree! There is a lot about you that I admire.
K: Ok, so then if I’m so awesome, where is my spa day? Is it because you don’t make more money? Does that bother you?
T: Wait, what?
K: Why don’t you make more money so I can have a spa day?
T: Cause I’m lazy.
K: Ok, fine. I’ll ask normal questions. Pssssh.
I know it’s been a long time, but can you remember your initial reaction when I told you about my illness?
T: You brought it up really early on.
K: Yeah, it might have even been on our first date.
T: Maybe. You were pretty open about having it. I kind of just thought of it as another fact you learn about someone else. It was interesting, but I don’t recall any weird reaction. I just thought it was one of those things.
K: We used to be a lot more physically active in the earlier years of our relationship. Are there any things that we don’t do as much that you miss?
T: it seems more like we did those things because it beat hanging out in a dorm room and we didn’t have to work 40 hours a week. A few weeks ago, we went hiking and today we walked State Street, so I think we’re plenty active.
K: When we first began dating, you wanted to learn more about my illness but I was really afraid to share some of it with you. How difficult was it when I didn’t share?
T: It doesn’t really stand out in my mind. It probably bugged me a little bit, but more from a standpoint of I didn't know what things were okay to do sometimes. I figured you would share more when you were ready.
K: Part of how I was finally able to share my illness with you was through my blog, which you encouraged me to do. Does it still help today with communication on how I am feeling?
T: I think you communicate more directly with me now than in the past. I think you should blog more often though.
K: I sometimes share a lot of information on our personal lives on here. Does it ever bother you?
T: No. Like I said I think you should blog more. You share personal stuff, but it’s pretty nonspecific. If someone really wanted to, they could easily figure out who I was. But I don’t think that’s a big deal.
K: We have really begun to do a lot in the past year with the Arthritis Foundation and other organizations, like IAAM, to raise awareness about the many different types of arthritis. Do you feel more involved with my illness because of it?
T: It’s fun to do the walks and do fundraising things. I like feeling like I’m helping. I mean, I wonder sometimes how much it helps but I like feeling like I do something. I like that you are so involved with organizations and WAAD. I think it would be really neat if you could turn it into a career... You know, if you wanted to.
K: How do you think the dynamics of our relationship have changed as my illness has progressed?
T: I dunno how much things have changed. I sometimes wish we did more, even cleaning and such around the house. But then I don’t do it either. Sometimes I forget too, because of our schedules, that you work 8 hours a day. I think that if you weren't sick, you'd get frustrated with me not cleaning and such as much too.
K: What are the three things you hate the most about my illness?
T: Hmm. Sometimes it takes a while to get going on days. Like Saturdays [our shared day off], I want to go do things sometimes more quickly than we can. I don’t like that it makes you stiff and that you hurt all the time. I wish that I could fix that. I dunno, it all just comes down to I wish that you weren’t sick and didn’t hurt. I wish that you could be like me and lay around out of laziness and not because you’re being forced to because of your illness.
K: What is it like for you emotionally when I’m having a string of bad days or a bad flare up?
T: Sometimes it’s vaguely annoying because it seems like my sad days seem to coincide with your bad days. Sometimes it feels difficult because I want to be able to be whiny and have my own bad days, and I feel bad saying it because it is so, so much for you… but sometimes when you have bad days, you get really good about sharing things and I feel like it’s so much going on that it gets annoying. I like that you share though. I feel like a jerk saying that. Don’t be mad at me.
This interview just got real, yo’
This interview just got real, yo’
K: Do you worry about little things hurting me? Are there ever times when you are afraid to do something with me because you’re worried it will hurt?
T: I’m always conscious when we are walking to walk slower, because I walk really fast [he does!] and I know that walking faster like that probably hurts you. There are other times where I want to go do things, like go hiking, and I mention it but then I realize that it’s probably not the best idea that day.
K: I could probably be more direct about things like that too though. When you say hiking would be fun and I say maybe, I should be saying more directly that it’s probably not a good idea that day.
T: Maybe ;)
K: You are always so, so good at helping me when I’m not doing well. Do you ever get tired of it?
T: Yeah. Some days it feels like I have to clean up after you, but then I realize that you’re probably not feeling well. I generally like helping. If you are feeling crummy and needed me to get something, I would do it but you never do that. I feel like you should be more open about that.
K: Do my limitations ever frustrate you?
T: Sometimes, like if we go hiking or something. But I always overestimate my own physical ability too. I wish we could do things more, but you don’t have too many limitations.
K: What do you think are the most difficult aspects for a spouse or loved one of someone with RA to understand and deal with?
T: I think it’s just tough to realize what being in pain all the time means. I don’t have any concept, and we’ve been together for four and a half years. And just knowing that you can’t do everything. Yeah, it would be fun to play tennis and things like that, but it’s not worth you being in pain. There are other fun things we can do though. I think it can be a good thing. You can find other fun common interest things to do… like seeing giraffes! Or morning sex on the weekends.
That might fall into the too much personal information category. Oh well.
K: Do you have any advice for fellow couples dealing with autoimmune arthritis?
T: I would advise the person with the illness to just be open. If the person really wants to be with you, they want to know that stuff anyway. If they don’t, then they’re not worth being with anyway. I guess that advice doesn’t really apply to people already together where one develops an illness.
I would advise the significant other to be open and understanding – realize that any sacrifices you have to make are small compared to actually being sick. Your sick loved one doesn’t want to be sick and limited. Just be nice and do the things you’re supposed to do, whether that person is sick or not. I know that’s a tall order for some people though.
I'm really glad that I was able to interview him, because I think it really helps me understand the things that he goes through more too. I think sometimes I make myself feel bad about being sick and bad that he sometimes has to do more, and I probably do it more often than I need to. And we all need to have our days to whine. I'll still share what is going on with me, but maybe I'll tone it down once in a while so he can have a whiny day :)
I think it would be a really cool project for all of you coupled people to interview each other with some of these questions. It can be sometimes surprising what you find, and it might just help you guys grow closer.