This week I thought I’d do something a little bit different for the Fibro Warrior Wednesday interview. I’m talking to a different kind of warrior, a spoonie partner. A few weeks ago we talked with Nick Lutes. This week I’m going to interview his girlfriend, Kim. Kim is 32, and (like Nick) lives in Milwaukee, WI.
How did you and Nick meet?
I found Nick last December on a dating website. He sounded like a nice guy, and I couldn’t resist answering his profile’s dare to contact him. We emailed each other for three hours that first night, and our first phone call lasted SEVEN hours! Looking back, I’m sure Nick was thankful for his earphones and a stand for his phone. After texting and talking nearly every day, we finally met in person about a month later when I was apartment hunting in Milwaukee. I lived in Houston at the time and was in the middle of relocating. Nick and I hit it off really well; it was like we had known each other forever. We’ve been dating for about 6 months now.
Was he already sick at the time?
Nick was diagnosed with Fibromyalgia at The Mayo Clinic in Rochester, Minnesota about four months before we started talking. He didn’t include anything about Fibro in his profile, but we talked about it right off the bat. By the time I met Nick, he had already achieved a somewhat consistent level of pain (6 out of 10 on a good day) and was ready to move forward with his life. Despite all he had been through the past few years, including numerous tests, doctor visits, various prescription medication trial and error, surgery, etc., Nick really amazed me with his optimism and positive outlook.
What was your initial impression of his illness?
I’m ashamed to say that my first thought when Nick told me he had Fibromyalgia was, “Wait, my 70-something year old grandmother has that.” I learned pretty quickly that Fibro does not discriminate based on age or gender. I really had no idea how complex and misunderstood it really is, and I think Nick was pleasantly surprised to see that I was so eager to learn and educate myself. If I wanted to have him in my life, it made sense to try to understand him and what he was dealing with as best I could. The more I learned, the more disappointed I became in the lack of support for the Fibro community. Until he met me, Nick didn’t have a great track record with dating post-diagnosis; some women thought it didn’t sound like a big deal but later found out they just couldn’t handle his reality. I can only imagine what it is like to be rejected solely because of something you have very little control over. I often tell Nick that he is not his illness; he is so much more.
[Tweet “You are not your illness, you are so much more.”]
How has his illness impacted your relationship?
As you can imagine, Nick’s Fibro has had a pretty substantial impact on our relationship – mainly because it is always at the forefront of our time together. We have to consider how he is feeling before deciding what we can do. I ask him how he is feeling every day and how he slept the night before, which he knows means that I’m looking for an indicator of his pain and energy levels. I have to choose my words carefully at times – when Nick is in a bad flare, I tell him that I hope he gets some relief soon instead of saying that I hope he feels better. When we try to make social plans, I have to be careful to remember that there is always a possibility that he may not be able to go. It is almost like coming up with another language in some ways. Just like Nick, I have learned quite a bit about myself and what I am capable of from his Fibro. I imagine it would be very difficult to have a partner with Fibromyalgia if you are not a patient and caring person; you also have to be willing to give up the spotlight because Fibro is very demanding of attention.
Have you ever considered walking away because of his illness?
To be honest, I haven’t gotten to the point of wanting to walk away and think it highly unlikely at this point (especially solely on the grounds of his Fibro), but I would be lying if I said I haven’t thought about whether I am strong enough at times. But life is uncertain, and even if I were dating a perfectly healthy guy, there is no guarantee that he would stay that way forever. To me, Nick is worth the special consideration, and I would be hard-pressed to find another person with all of his wonderful personality traits who could make me as happy as he does. Nick is very thoughtful and tries extremely hard to be an equal partner to the best of his ability. In the end, we both refuse to believe that the way things are now is the way they will always be. There is always hope that we will be able to manage his pain more effectively and that possibly there will be a cure someday.
What is the one thing about his illness that most frustrates you?
I would have to say it is most frustrating to watch someone I love suffer on a daily basis, knowing that there is very little I can do to ease the burden. If I could take Nick’s pain away for a day or even just an hour to give him a break, I would. Since that isn’t realistic, I’d have to say that the lack of being able to plan social events can be pretty frustrating for both of us. Guilt plays a large part in it – his guilt over feeling like he let me down because he can’t go out with me and my guilt over going out and having a good time while he is forced to stay at home in pain. It is definitely something we talk about often. I try to cope with this by always having a Plan B, which usually means asking a friend or family member to “stand by” in case Nick is not able to go with me.
What one piece of advice would you give to someone whose partner was dealing with chronic pain/Fibromyalgia?
The best advice I can give is that communication is extremely important. I can’t tell you how many times Nick and I have discussions about seemingly small issues. It’s not because we’re nagging each other over these little things; we’re simply clearing the air before we end up with a miscommunication or a buildup of resentment or anger (e.g., Nick tends to talk much less when he is in a bad flare, so we have discussed this so I wouldn’t think he was in a bad mood or mad at me about something). It helps that we are both pretty blunt and honest people and tend to not jump to conclusions. Neither of us is afraid to seem vulnerable in sharing our thoughts and feelings. Quite a feat when we both came from marriages with poor communication and conflict resolution skills.
I hope you enjoyed this peek inside the mind of a spoonie care-giver. If you’d like to know more about Kim, she has recently started her own blog, Holding Your Spoons, where she plans to talk about her experience dating a man with Fibromyalgia, share educational information for caregivers, provide book reviews on various Fibromyalgia books, and share general life issues. Nick will also guest blog and share his perspective. Kim and Nick also co-admin a Fibromyalgia-based Facebook page, Fibro For Us, and a group, Fibro For Us Chat. If you’d like to contact Kim directly you can reach her via email or twitter.
This post is part of the weekly Fibro Warrior Wednesday series, where I share the stories of Fibromyalgia Warriors (of all types). If you’d like to make sure you never miss an entry, be sure to sign up for my email list.
Dawn says
Hi, this is a great blog! I particularly understand the comment about Nick talking less when he’s in a flare. That’s exactly the same with me, but I always tend to have to explain myself as my hubby forgets. This has prompted me to explain it to him before my next flare so that it’s easier on us both. Thank you so much.
Julie says
I run into this, too. When I don’t feel good the last thing I feel like doing is talking. When it’s been a while my hubby forgets this and takes it a bit personal, until I remind him that I don’t feel like talking, but I’m still ok with listening (sometimes). I try to let him know though, when that’s the situation. I don’t want him to feel like I’m shutting him down or out, when I simply am too tired (or in pain) to bother with talking.