Special thanks to Eric and Maria, Eric for sharing his wonderful roller derby photographs which I feel illustrates the toughness of those living with chronic illness.
Guilt And Chronic Illness
I know that having chronic illness is not my fault. It’s something that happens to millions of people, and yet, sometimes I find myself tripped up by crushing guilt. For the past two months I have been dealing with the side effects of my seizure medication while we steadily increase my dosage. The nausea, skull-splitting headaches and fatigue have been debilitating to the point where I don’t leave my bed unless I absolutely have to.
Even staying here, I spend much of my time sleeping, so I can’t even function well enough to be there on Facebook when my friends need me. That’s part of the guilt. Over the past months, I have watched while people I care about have dealt with death and been unable to be there to share their sorrows. I have watched as people I love have been mentally and physically traumatized, and all I can do is send what feels like trite messages, rather than grabbing my baseball bat and bashing heads the way I wish I could. I have stood by and watched while friends have dealt with surgeries and broken bones and all I could do is offer messages instead of going over to help out or make food to take over. And knowing that I cannot help those I love hurts desperately. But all I can do is lay here and relate to Zeus’s pain when Athena was born from his skull.
The other part of my guilt stems from knowing that I am keeping my husband from doing things he loves outside of the house. No, I am not refusing to let him go places. But he feels the need to stay with me and take care of me, which makes the guilt even worse. I’ve tried to get him to go to Disney but he doesn’t want to leave town without me and I can’t deal with the heat and the crowds right now. Not to mention the nearly ever-present nausea and headache tends to put a kibosh on entertainment plans.
Chronic illness doesn’t just affect your health. It affects practically every aspect of daily life. It affects your family, too. I have been reminded by my eldest son that I am “not a burden, you’re my Mom.” but it doesn’t feel that way. I can’t help my friends, I infringe on the plans of my family, my husband has become my caretaker and I feel awful about all of it.
So if I can’t be there for you right now, that doesn’t mean that my heart isn’t breaking for you. It doesn’t mean that I don’t care. I always care what is happening to my friends. It just hurts that I can’t do what I truly want to do for you, so I have guilt.
I keep holding on to the idea that eventually it will get better. I’ll adapt, or we’ll try a new medication and the carousel will begin again. Since I’m still new to my chronic illness, I am trying very hard not to give up on my dreams, but the reality is that I may not ever accomplish my goal of being a biologist. So I live through you. My friends who are scientists. My friends who are artists. My friends who are simply sharing your lives with me. I wish more than you can possibly know that I could be there in person to share your sorrows as well as your joys. But I can’t. As with every person with a chronic illness, I have to take care of me right now. But that doesn’t mean that I’m not feeling for you. I’m still here. I still care even if I can’t be there in person.
****I can’t thank Maria enough for expressing how we all feel at times. I know the guilt I feel that my husband is now also my caretaker. This is not what either of us signed up for, and the guilt can be overwhelming. Also, knowing Maria, she would be the first person to step up if anyone is hurting or going through a tough time. The inability to help, which is almost instinctive in people like Maria, is truly the worst part of having a chronic illness. I know Maria will soon be feeling better, but also that adjusting to a new medication can be physically and mentally very fought. Many people simply can’t deal with it, and my own doctor commented that we forget how truly tough and brave a person has to be to deal with a chronic illness. Medicine is still very primitive in many ways. Pain is something many of us live with, and as a once very healthy person I am shocked at the level of pain so many have to deal with. I had always assumed “You get some pills.” or “There is a shot for this right?” No, a lot of what medical professionals have to give us is simply “Just deal with it, we’re sorry.” Thank you again Maria. I agree with your family though, you are very special, and I hope soon you are back at Disney with Ken. It’s OK, you are worth waiting for no matter how long it takes.****Kitty