I was tagged for coming up with “Seven Things You Don’t Need To Know About Me” and, in the spirit of resolution season, I’m going to stick with this rather than the more common one that just says ‘don’t know about me’. Why? Because, the things that aren’t necessary to knowing myself better can’t be worth holding onto.
#7 Personal Secret: I resent others for my not having any personal space
When I started digging into my muck, I first checked to see how ‘secret’ is defined, in general. The definition that I felt fit this particular secret was #4:
“designed to elude observation or detection“
Living with an autoimmune illness, we know that carrying around stress and stirring up our immune system is the worst thing we can do to ourselves. Creating and harboring stress while having lupus is nothing short of pouring gasoline on a fire, emotionally and physically. What might elude most of us, however, is the fact that the most caustic forms of stress are those that lie underneath our surface, chronic if you will, rather than the big blow-up types. In order to find what lies beneath, it takes some active searching and that isn’t usually on our daily to-do lists – probably because it’s a lot of work.
The feelings associated with my lack of personal space have been very apparent to me (and my family) for quite some time. The amount of resentment I’m harboring, however, caught me off guard until our recent winter storms. Cabin fever aside, let’s just say I welcome the gloomy rain. Historically, I had little choice in giving up my home about 7 years ago – life got ugly (my parents split) and people didn’t like to see me as a single mom with lupus going it alone. I knew that sharing my life beyond my girls was important and necessary. I also knew, though, that I could be pretty independent and enjoyed doing my own thing.
There is a great deal of research on multigenerational living (my mom lives with me now), on the suffocation dance many couples face in their relationships from time to time (I’m not married – once is enough), on supportive parenting tips, on work-related warfare and so forth. For the most part, I already know what works in keeping things fairly smooth for all three adults, primarily two (but technically five) daughters, one visiting grandson, one blind and manipulative Aussie Shepherd and two spoiled cats in our 2000 sq. ft. home. In a nutshell, managing the physical space helps a great deal with preserving the emotional space of my co-habitants and I do it using creative organization, a tri-level home, well-designed landscaping and food.
Physical space definitely equals emotional freedom for me and feeling free is one thing I rarely notice in having lupus. When I was first ill and going through a tough divorce, I relished being able to cook whatever I wanted, play my music and play it loud, goof around with my young girls and not always feeling like I had to be such a grown-up. Even though there was a great deal of stress during that time of waiting for many answers, I felt more free than ever because I had my own place again. I started up chemo and would come home not having to be taken care of or be looked at with pity because I was alone. I probably could have used some help, but felt an immense sense of accomplishment by doing it all alone ( I credit that to getting me where I am now in managing well). In fact, when I was hospitalized for declining kidney function before the chemo, I didn’t tell anyone because I didn’t want visitors -just my personal space to deal with what was happening – alone and free to handle things on my own terms.
This process of stepping away from painful or stressful events is a coping technique I have used a lot and may have become a little carried away with called “self-distancing“ (I recently ran across it on Blogher then realized the referenced article was in the Oct 2008 issue of Oprah found in my ‘to-get-to pile of readings’). It is basically a tool to help reduce our stress responses to an event by offering, what Ethan Koss, PhD at the University of Michigan, describes as a “psychological time-out”. (Oprah Magazine, pg. 194) This is a great coping strategy for anyone newly diagnosed to consider putting into their Lupus tool box. Ideally, it’s stepping outside a situation to see the forest from the trees and gives you some emotional space before having to jump into action.
My problem in 2008 was that I stepped outside myself to avoid stressors from expectations and lupus, but got lost. I ended up neglecting to contribute some other parts of myself back in both physically and emotionally. The catch with using this coping strategy is that it is an effective tool only in the short term – take too long and we find ourselves cemented into non-action or, worse, denial. Just as denying our illness initially upon diagnosis can sometimes help us in adjusting to the changes…waiting too long to seek treatment options and management could be deadly. In an effort to minimize my stress levels about lupus, I have now hampered any stress-free benefits by distancing myself beyond it. As I keep thinking that I am coping with stress, I’m simply just piling it all under the surface. What makes this realization frustrating is that I am purposely thinking myself into more illness – not just neglecting my self care.
In my efforts to convince my family I’m fine, I deny my place here and not just with lupus. I don’t mean thinking about having it day in and day out – I mean staying in touch with how I can make my life work well by paying less attention to thinking and more towards doing. These days, I adjust the style or volume of music to meet my elderly mother’s mood, cook meals that everyone will eat, feel forced into living with knick knacks and other items that don’t reflect who I am, and basically have to monitor the things I say or do - as I seem to be made of a very different cloth than the other adults I live with. You might say “No, you don’t have to do that”, but this is where it gets messy.
I am one of the many individuals living with lupus who are generally more relationship-focused in their coping with illness. I do whatever I can to minimize the impact my health has on relationships with my family and tend to overcompensate by putting their needs before my own way too often- just to prove I am still capable of contributing. Yet, the more I try to cover my lupus, the more I cover myself up leading to more resentment. I am battling daily that fine line between fusing who I am and the roles I play in my relationships. Perhaps due to the bond, sharing my physical space with my daughters has never been an issue, but I have so little patience with the others – even the pets, because my mom spoils them so.
I’m not saying that my health is solely based on my thinking – what I am saying is that my thinking in 2008 directly affected my behavior that made my health/life less than what it could have been.
I’ve run into several bloggers who are admitting that when they feel better, they get lazy on taking their meds or scheduling their appointments. I do this, too, and it is this same style of coping – distancing ourselves from having to admit that meds are important or that the lab work won’t turn out the way we want- that can cause us much more harm than paying attention to where we stand.
The resentment that has been building up within me, then, has less to do with me being required to share every square inch of space with no room to call my own. It is more about the “space” within my head, body and soul. I know the people I live with aren’t really to blame for me not feeling at home. I just don’t feel like I really belong here, because I’ve purposely stayed away too long.
This year needs to include defining some personal space (both within my home and within my life with lupus) that I can feel free to enjoy. I want to get back to acknowledging things about me that I can be more open and joyful in sharing with people – not just doing for them. To be honest, I think my roomies would be happier about that, too.
The pets, though, could care less …and that’s fine by me.
Relationship-focused coping source: Relationships in Chronic Illness and Disability, Renee F. Lyons, et al. (Sage Publications, 1995)
