Survivor's Guilt

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.