Chronic Snarkopolist: Cycles of Illness – Here and Gone Again (and Again)
Hello my loves!
I have taken time off and missed you very much. I have been sick and needed to pull myself together. And then I was afraid to write. Mostly because I didn’t know what to say anymore.
Then I realized that you would understand. And so I writing to you now. I am writing because sometimes I think we forget who we are and what to say and so we bring ourselves to the world as a blank. I have been blank and paralyzed and afraid for a few weeks. But I am back now. How I hate these moments. I HATE THEM. I hate being sick and I hate when I have to take time to remember who I am. I hate that this will be my reality for the rest of my life. I will always have to spend more time dealing with life issues than most people my age.
I am also humbled and grateful for the friendships that sustain me. I have people helping me drive out of state for my six month doctors appointments. Someone who I am getting to know but who hasn’t known me long said, “You’re young and healthy, you don’t need help driving that far.” And I realized that no matter how sick I feel or how much I am hurting I have learned to hide it well. We all have. We don’t complain or talk about it so we don’t “bore people to tears.” Therefore no one KNOWS we need help with things most people wouldn’t need help with. Like driving long distances. I felt naked in that moment, vulnerable, ridiculous even – for having needs that some people wouldn’t. But I said, “Yes, sometimes I need help driving.”
I didn’t explain further. I didn’t say how many friends I’ve lost or how many I’ve never made or how difficult I feel when I cannot focus or concentrate or when my brain swells from a lupus flare and that dealing with lupus is part of my reality that I hide. Not because I am ashamed but because there are no words to bring it up in normal people conversations. Not for thyroid issues. Or any autoimmunities or cancers so many of us silently deal with. Or when we speak about them we seem like we are complaining or sullied. I didn’t say how many thousands of dollars I’ve spent on healthcare or how illness has shatter my life again and again and how I’ve spent more of my life picking up the pieces of my career or my relationships than I have on taking care of ME. I didn’t mention what I go through to get up out of bed or eat, or live my life each day. I didn’t explain that I’m terrified of being loved because I’m afraid that if I let people love me I will NEED them and in needing them I will become so vulnerable they will resent me for not being the person they thought I was. I didn’t say that I hate being abandoned for dealing with a chronic illness. I didn’t say how grateful I am when people like me anyway. Now I didn’t say how I’ve come to believe that we all damaged – healthy and sick alike- but many sick people I know have had to emotionally bear the burdens of being blamed for what is not our fault. And the healthy people often seem smug in their good health. And I say nothing. I say nothing because I don’t know what to say. I didn’t even know what to say to you when I’ve been gone so long and you get it.
It is enough I suppose, to come back and test the ground I love. The worst part of being chronically ill for me is indeed the unwanted coming and going. Life seems to continue for everyone else but for me it stops until I am OK enough to carry on. And people forget about me. Or they drop me from activities I really loved and needed. So many people don’t know how much I depend on them and my social outlets to see myself as “normal” and “able.” Mostly because they cannot fathom a life where so much depends on so little a thing as simply laughing that day. And I never know if saying, “Hold space for me,” is better or safer than simply finding new activities when I can come back enough. I have decided that people are not cruel so much as blind, unwitting, and unable to fathom.
Again and again this cycle happens – in short doses – rest, better, rest better. Hospitals and health. And so we grab life when we can, and handle the less pleasant when we cannot. Cycles. Cycles of chronic illness. Living life. Playing the cards we are dealt. Understanding that some people don’t want to deal with it or cannot or will not fathom it. Trying not to take it personally, though it hurts. Not knowing how or when to discuss it with friends who are getting to know me. Losing friends to it no matter what – because I am gone too long and life changes, or because I cannot do the things I WANT to do or because people are afraid of being involved with me, or maybe because I seem unreliable, annoying and difficult during my less pleasant phases. Who knows? Living life when I can. Living it as fully as I know how when I am able. I have lived like this and yet I am still looking for navigation strategies. I suppose we all are.
Does this happen to you? How on earth do you handle it? Have you found enough social support and understanding to be able to come and go with relapsing and remitting chronic illness or do you simply just make new space for yourself when you can? Do you get braver as time goes on? Does it hurt or have you learned not to take it personally? Do you have any navigation strategies? Which ones? Is there such a thing? Do you try to make it easier for people around you? How? Does the cycle of coming and going ever get to you? How do you handle it? What do you think? What do you do? Please tell me! I must know.
I will see you in two weeks! Kiss kiss!