I’ve been thinking about this quite a bit and thought it would be an appropriate follow up to my husband’s guest blog. As I read my husband’s blog post the other day, I realized, once again, just how lucky I am to have such a supportive husband. He has gone above and beyond to help me deal with this illness and his dedication to our marriage has never wavered. I know that there are many others out there that do not get the support that I do. However, reading his post and seeing how he feels about our situation brought up a feeling that I deal with a lot because of my bipolar disorder.
It’s hard for me to accept the things that my husband has been through because of my illness. He is my rock and the shoulder I cry on when it is all too much. He has been there for multiple hospitalizations, med changes and drastic mood swings. When I am in the grips of my illness, he is the one that tries to get through to me no matter how far gone I am at the time. He has rearranged his entire life because of my illness and our daily life is dictated by how I am feeling. He never complains. He just does what needs to be done. He is still the happy, chatty, animated guy I fell in love with and it amazes me everyday. My guilt comes from the days that he loses his happy, chatty self because of my illness. It’s usually the thing that brings me back when I am completely out of my head. I can’t stand knowing that I am the cause of that change in him. The guilt from this is overwhelming sometimes and it reminds me of Atlas bearing the world on his shoulders. I know this experience is not unique to my situation. Many people with all different types of chronic illness suffer from guilt because their illness changes, not only their lives, but the lives of their entire family.
So, how do you deal with the guilt that you feel? There are just as many ways to work out your guilt as there are ways to experience it. For me, a large part of my guilt comes from the way I may act toward others when I am extremely depressed or highly manic. One minute I’ll be so depressed that I can barely come up with the energy to respond when I am being spoken to and the next I will be so angry and rageful that I cannot see reason. I don’t always have the ability to stop myself from acting out when I am truly in the grips of my illness and the things that I say and do are too upsetting for me to handle when I am feeling more stable. The shame and guilt associated with my drastic changes in mood and behavior can be almost crippling at times. I cannot wrap my head around my behavior and I feel so terrible that I cannot face the people that were witness to me at my worst.
In order for me to move past my guilt, one of the first things that I do is to try to always make amends as soon as I am aware of something that I have done. It’s a very simple thing to do and is something that lets the other people in your life know that you are aware that you have done something wrong or out of character. I think it is important to let our loved ones know that we are thinking of how our behavior makes them feel and that we are trying to see it from their point of view. I think an apology is only the first step though. In order to prove that what you say is true and not merely something said to placate the people who are important to you, you have to correct the problem or institute some sort of effort to make real change. This lets those around you see that you are taking the situation seriously. It helps to alleviate guilt to know that, although you have made a misstep (or in some cases tripped and landed right on your face), you have made the effort to make it right by them.
There is also the guilt and shame of feeling like a burden to those you love. Right now, my illness limits my ability to handle the things that I used to be able to do on my own. It’s also temporarily affected my ability to work while we get medications balanced and I work with my therapist to learn new ways of thinking. I can no longer function at the level that I used to and it’s one of the biggest problems that I have with this disorder. I have always been a fiercely independent person that never asked for help for anything. I have had to learn to ask others for help and then (and this is the important part for me) actually let them do it. I truly hate it. It causes me quite a bit of shame when I have to ask others to help me accomplish things I used to be able to do on my own. I prefer to do things on my own and I love to do for others. It feels entirely unnatural to me to let others do things that I should be able to do myself. Something that I have learned though is that, if I do little things in return for the people around me, I don’t feel like I am so burdensome and I feel like I am still contributing. I’ve also learned that little projects that I can do for others are just as helpful as the larger ones. The important part is I can still help others in my own way. I’ve also learned to express my gratitude for their help so they can see that I truly appreciate them helping me accomplish things that I can’t get done for myself. It helps to alleviate my guilt to see that I am still doing for others as they do for me.
There are also times when my illnesses prevents us from getting out and being with other people or doing something that we had planned. My husband is a very social creature and loves to hang out and talk to others and we have been pretty isolated lately. At the moment, we are still working on medications and adjusting my thyroid to handle all these new meds so I get really run down and weak pretty easily. I also have a lot of anxiety around other people (especially large groups) so I tend to want to stay away from these types of gatherings. Sometimes I am just not feeling well enough to go out and we have to change our plans on the spur of the moment. We’ve missed all kinds of family gatherings and special events that we had planned to attend because of this. We spend many weekends just hanging around the house because that is all the energy that have at the moment. It’s hard on my husband because he is so naturally social. I feel badly that we cannot do the things we want to and we have to settle for second (or sometimes even third) best. In order to alleviate some of the guilt I have about this, I am trying to introduce more social activities for myself slowly. I have taken over grocery shopping because that gets me out amongst other people for a short period of time. I am going back to church in small part so that I can get used to being around groups of people (but it’s mostly so that I can start rebuilding my spirituality) . I have also started working out again to rebuild my energy and stamina. If I can rebuild my strength and ease my social anxiety, I can help us to rebuild our social calender to something like it used to be.
There are other times when I am asked out by friends and it’s an event that I know I wouldn’t be able to handle in my current state or I cannot go at the last minute. Because I have mastered hiding my illness from others and only just recently “came out” with my illness, I didn’t really explain to them why I couldn’t go, I just told them that I couldn’t go. I have lost several friends because of this. They give up after being stood up or turned down over and over again. I have a friend who has asked me out several times in that last month and every time, I come up with an excuse not to go. She is always trying to get me to come help her set up for an event (she does flower design), go thrift store shopping or to go listen to her husbands band. I have managed to make myself go once but I haven’t gone out with her since then. I always end up feeling guilty because I’ve prevented myself from going to an event with friends and they don’t understand why I am constantly saying no to their invitations. People can’t understand my illness because I don’t bother to explain it to them (or even let them know that it is an issue at all). In order to lessen my guilt about my limited social abilities I need to start being more honest and open about my condition and letting others know the things I can and cannot handle. If I tell my friends that I am not feeling well that day or that it is a situation that I am not sure that I am prepared to handle and I explain to them why, they may be very understanding and maybe we can come up with something else that I can handle. Not hiding my condition can aid me in alleviating some of the guilt I feel about not being able to do as much as I used to do socially.
There is one other huge one for me, the guilt about parenting my son with a chronic illness. It’s hard enough to be a parent today without complicating that with a chronic (and often untreated or improperly treated) illness. There were definitely times when I was unable to be an effective mother because of my illness. Sometimes, I was stuck in bed because I was sick from my hypothyroidism and couldn’t be there for him. I remember him coming into my room a lot trying to get my attention for one thing or another and I just barely had the energy to respond to him. Other times, I was physically there but unable to participate emotionally because of my bipolar disorder. There were times when I was so depressed that I wouldn’t move for hours at a time and I was completely unavailable to him if he needed me (thankfully when my illness got really bad my son was a teenager and capable of doing most things for himself). It must have been very scary for him to see me like that (and sometimes worse when I was manic). I didn’t take the time to explain to him that I had an illness that affected my day to day functioning and that I wanted to be the parent he wanted and needed but that sometimes that wasn’t possible for me. In my head, he knew what was happening to me because he could see how it was affecting me. I know he had it rough because of my illnesses and I suffer from horrible guilt because of it. The way I try to deal with this is to try to look back at all of the good things I was able to do for him and to look at him now and the type of man that he is now. There were many days that I was completely the mom he needed and we got to have a lot of fun together. We had many little adventures and we were able to host and attend some pretty cool events together. There were also times when I was able to parent through my symptoms and get things that needed to be done for him accomplished. I also try to be completely honest and upfront with him about my illness now and how I am doing day by day. He still doesn’t completely understand what all my disorder entails but he is beginning to get an idea of what this does to me. The biggest easing of my guilt comes from the gratitude I have for the amazing relationship I have with my son and seeing the compassion he shows to others. I could not have possibly done everything wrong if he is such an understanding and compassionate human being. While I still feel guilt sometimes for what he had to go through because of me, it is lessened by concentrating on all of the good things I was able to do for him and all of the good times we had together.
Everybody has done something at some point that made them step back afterward and say, “Oh my God. Did I really do that? What was I thinking”. It is completely natural to feel guilty about something that we have done. It helps us to remember and maintain our own set of morals and standards. But when guilt comes from something we can’t control, like a chronic illness, it is unhealthy and detrimental to recovery (or at least stability). I have had to deal with quite a bit of guilt because my illness has changed the way I interact (and sometimes react) to the world. It’s a feeling that is tough for me but I am slowly learning ways that I can alleviate some of it. I’ve also learn better how to identify unhealthy guilt through self awareness and paying attention to my thoughts and feelings (see my posts on Self Awareness here and here) . Since I can’t control the past (wouldn’t that be a cool trick though), all I can do with the monster in the room is to work on my present and future and reduce it’s influence in my life. It’s a monster that can be easily controlled and sometimes completely vanquished with a little effort and a little compassion and understanding for yourself. For more information on guilt and chronic illness you can visit the following sites for some great information: