I’ve found that my relationship to illness has become more of one that requires me to constantly acknowledge a relationship with illness.
Realistically speaking, the days of being able to keep lupus and my Self separate are long gone. Although there are days when I feel like there is no reason to see myself as ill, I know that not recognizing that fact will lead me to gloss over a part of who I am that I have grown to respect— more than I ever thought I would.
There are many reasons for us to not see our health challenges on a daily basis. We may see risking relationships with others, by informing them of our current state of affairs, not being worth bringing up the issue at all. Loss of job, loss of companionship, loss of friendship, loss of innocence, loss of ourselves and questioning our roles that we use to place ourselves in this society. Where does disclosing that part of our lives really get us?
The “Loss of Self” ~ how many times have we heard that phrase in books authored by patients and professionals alike? A distorted or unfamiliar view of who we are, where our places are and the unknown of what life means anymore, now that we see our health slip away?
Wait a minute? When did we ever have the answers to those questions? Or, more accurately, when did the challenges within ourselves and with others become a static condition when we were healthy?
Perhaps that is why some of us resist in making our illness an issue. Maybe, to some degree, we recognize that the things we learn from living with an illness is stuff we should be learning anyway. Gratitude for the simple pleasures in life to experience and share. Friendship and learning how to accept help, support and encouragement from others. Knowing when to say “when” and when to keep a little care for ourselves. Learning how to communicate effectively and advocate for ourselves, because what we need does matter. I’m recognizing that life is never going to be predictable and that developing a sense of inner strength will give me a stronger footing when some of the tough questions come up.
Before you anticipate that I am about to say how grateful I am for developing lupus, don’t. No one asks for illness and no matter how much good can come out of it, being ill is still a real drag and burden. I feel for those who are so young and have to face their health challenges so early on. They need to constantly evaluate each breath they take without the gift of time or memory of enjoying their youth. I know that there are so many other people who experience the painful and brutal ravages of this disease, who are unable to gloss over their challenges, as I am able. Those people who I know to be living with unfathomable health challenges are amazingly inspirational, funny, clever and determined people. They are also pretty pissed off about having to deal with their health on top of everything else this life throws at them. I imagine Bette Davis would have referred to illness in the same way she did about getting older: “…ain’t for sissies.” Do we really acknowledge just how much strength it takes for these people to “look fine?” I don’t think we do, but we need to start.
Just as this world has to come to the realization that living without illness is becoming a rarity and a majority of people have chronic conditions (since little is actually cured anymore – where’s the profit in that?), so do I. That means that those of us who are living with chronic illness need to, also, recognize just how much of a majority we are and that there is little we should have to hide. I let go of the notion that my talking about illness makes people uncomfortable, simply because it has become a vital component to who I am and want to be. I hate having to take meds, but am so grateful that the ones I can get my hands on give me another day of opportunity. I hate not being able to work full time in a job somewhere, but I get to explore avenues and new career possibilities—albeit from a financially-uncertain standpoint— that sometimes show myself just how surprisingly skilled and innovative I can be.
I’m beginning to see how complaining about my limitations and feeling embarrassed about my heath is a form of self-hate that really has no place in my life. “TMI” is probably the toughest part about knowing me and is really more about me forgetting to ‘filter’ rather than having an agenda to seek sympathy. What that openness does for me, however, is offer me chances to keep the connection between myself and my health strong. If that stays strong, then my contributions to family, friends and my community will, too. The most challenging part about having lupus, for me, is getting caught up with those who question its validity as a ‘real’ disease. I do realize that those naysayers will eventually experience their own mortal decline, in one way or another. Until then, I know what’s real for me and I have to take care of my needs the best I can by keeping things honest.
Living with lupus does define me, but it doesn’t own me. My relationship with lupus is what grounds me into truly knowing who I am, what I’m capable of, what I want and need from others. I would be, should be, asking myself the very questions about my place and purpose here, even if I didn’t have this illness. If I had good health, there would still be plenty of complaining, things to get frustrated and angry over, and experiences in feeling unheard or misunderstood from time to time. Living with an illness is a human condition that joins us all in the experience and there is really no reason to hide any of it. Who is immune to declining health, anyway? Mine has just been “auto”-mated for me and continues its processes with little regard to the damage it is doing to me. Until those bugs are worked out, it still remains a pretty important component to my overall system that requires patience, information, technical support and the willingness to work with the many, very real, glitches.
Am I thrilled to have lupus? Nope. Am I ashamed and angry that I have it? Nope. Would I be thinking about this kind of “Who am I and where am I going?” stuff without it? Yeah, I better “be”.
