[Ed.'s Note: Thanks for your comment Colleen. As I started to read it and respond, I found that I had far too much to say in the comments section about this corner of my life, so why not just make it a post and say what I really had to say. That said - I'm a pretty open person when it comes to disclosing personal information. BF, not so much. The idea of my discussing our lives on the internet is one that he's not really on board with, but it's more that he doesn't get why I need this outlet than his not wanting me to tell people about my (our) life. And of course he wouldn't tell me that I couldn't. Hell, his ex blogged about their relationship before and during our whole affair and the separation and divorce that followed; still does. But I digress (as usual); in the interest of respecting him and our relationship I've tried to keep the following post as honest as I can without sacrificing his need for some privacy.]
I really don't think that anyone who hasn't been there in some capacity, let alone this capacity can really "get it". They just have no reference point. I know that some people are just naturally sympathetic caretakers; love can seem to be the fuel that they run on. BF is a normal, well person - has been all of his life, hell, he went through Navy boot camp as a heavy kid right out of high school - but he's definitely not a nurturer. He's a sweet, giving, patient, generous, funny, sarcastic man and my other half; I love him more than anyone I've ever been with, but nurturing is not his bag.
I don't know if it's possible for him to understand the physical reality of what it's like to live like this, both never having had physical limitations that he couldn't control and knowing that he has had physical limitations that he could control. That he could just "suck up" and deal with it, however miserable it was. Boot Camp has made it into our discussions several times; eight weeks of hell, eight weeks of being broken down and pressed into a mold. I get it. It sucked. And he still has that "buck up, you can do it if you just try harder" attitude sometimes. Part of the ability to "buck up" is being able to see the end of that position of having to intentionally step into a role where you will just accept pain and physical exhaustion for a short period of time. It's something that I'm pretty good at on a short-term basis, but not for extended periods. I can make it through six weeks or so of the misery of forcing my body to be run ragged, but it's not sustainable and it ends up with either a hospitalization or being knocked out of commission for a month or two. But that's something that I do think that he should "get" because he's seen it happen. I was working full time at the school teaching, spending two evenings a week in my senior seminar, spending the other five nights a week preparing lessons, and still trying to be a good girlfriend and mom and it was just a bit more than two months after I had to drop student teaching that I was diagnosed with PAH. Months before we had planned a vacation to Playa Doradas in the Dominican Republic that there was no way we were going to miss unless I was bedridden or hospitalized. After we got back from an eight day stay where I spent almost half my time in the hotel room reading just because I was too exhausted to even get dressed and walk the thirty feet to the pool, my symptoms were so bad that I laid on the couch for another two weeks just recovering. My Skin Hurt. My Joints Hurt. I was Exhausted beyond anything I'd ever experienced. Oh and then I was hospitalized and diagnosed with PAH and scleroderma. So he's seen the worst, I just don't know if he's put it all together in his head like that, if he understands the clinical causation. But he's also seen it happen when I just push too hard for a three-day vacation, trying to squeeze all of the time and activities that a normal person would get to experience out of it. So he's seen it. He's seen that I have the capacity to push myself for some special event and that I'll pay for it if I do. He still resents the fact that I'll push myself (to the point of actually wearing my first pair of heels and playing quite the guest-of-honor) for my graduation party, or a holiday get-together, but that I can't do that on a daily basis in smaller doses to keep the house clean. Part of me understands that feeling on his part, but I do a lot more than he gives me credit for and I'm trying to do more (Anti-Depressants! Who Knew!). Part of me wants to scream (and sometimes does) that I don't want to be out of commission every other day because I pushed too hard the previous day for something like folding laundry.
Another thing that I do know that is that whether or not he can understand the physical and emotion strain that I'm under, he can come to understand me and trust me. Trust that I'm honest about my symptoms and my abilities on a day to day basis, that I really would rather be a well, productive member of society and this household, that the physical ramifications of taking all of these drugs, living a life devoid of the socialization that I need, worrying about my health, my future, my family, and the frustration that comes from it all take their toll and can mean that I'm not always going to be a pleasant person and it's not something I can control as well as I could if I wasn't dealing with so much constant emotional crap. And he knows that if he wants to continue our relationship on a more permanent basis (which he says he does) that he is going to have to accept these things as truth whether he "gets" it or not. We're just still working to get to that place. The place where he doesn't resent me, feel abandoned, feel that I'm disinterested feel used, and where I don't feel like he's being selfish and unsympathetic.
Mind you, it's a good solid relationship. Has been from day one. It was like someone stuck two magnets just the right distance from one another and the universe did the rest. Those are just the bad days, or hours, or minutes. We're focused on communication and nurturing what we have. Just as any relationship takes work and attentiveness, ours is going to take that and then some. We've been solidly working our way up the relational hierarchy to a place where we're starting to communicate much more openly and honestly about how we both feel and get what's underneath all that crap you put up to hide the parts of you that you don't want to have seen in the start of a relationship.
I did make him read "The Spoon Theory" and I often use the analogy in our talks, especially when he's frustrated with the lack of "spoons" that I have left over at the end of the day for him; it definitely helps. [Anyone who hasn't, read it. There's a link on the sidebar and whether you're sick, have people that you love who are sick, or are just looking for some insight into what it's like, this is a really good essay that has both touched and helped everyone I know that has read it.] We've also been reading some good books, both from the caretaker and patient perspective, and they seem to be helping both of us see what the other is going through more clearly. I tend to overreact to anything that I feel is an attack because of the illness, or to his lack of desire to get into "what's really wrong" (see also: avoidance, withdrawal, emotional unresponsiveness). And I can go from two to ten in a very short time if I feel like we have an issue to deal with and he's refusing to communicate with me. It helps to know that I do that. It also helps him to know that I will do that. And books like "Beyond Chaos" help us both to handle those situations, hell, life in general, in a more productive, engaging, loving way.
I'd love some suggestions of relevant books; most of the books that I've read are either too much about the disease itself (clinical, cold) or try to make generalizations about "living with chronic illness". As if "chronic illness" was a diagnosis. They might get the chance to touch on all of the autoimmune diseases, or the most prevalent ones, but they're too broadly sweeping. I also find that most don't give practical life advice for what to do about the earthquake that has taken over your life. What to do about work, family, relationships, sex, friends, ya know? Life. Especially for someone in their 20's like me who isn't inside of an established career/family framework and needs more help on how to put those things together, than how to keep them going. Which is really the most critical thing that I need because the blocks that I've been building my life with for so many years, that I imagined were stable, have come toppling down on my head and I have to rebuild my hopes and plans about things that I thought were set long ago, like my teaching career or motherhood, really, my path through life. It would definitely help to have a manual of some kind, or even just a tourists guide.
But I have found some relatable personal essays and such that have at least given me a window into how other people do it and that we aren't the only ones who struggle at it. We aren't the only ones who haven't gotten it right the first, second, third, or twenty-second time we tried. It's strangely hopeful to not be the only ones struggling, to not have to look around and say, "Why are we the only people who can't seem to get this right?”