Archive for the Week 02: Guilt Category

A Heart Bursting With Guilt By Cookie

Posted in The Blogs By Cookie, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

Guilt. How can a word that only consist of five letters, have such an impact on lives. This one word has had such devastating consequences on many people and their lives. Most of the time we have no idea how much impact this little word has on someone’s life, even our loved ones. There are times I am shocked when I look in the mirror there isn’t a scarlet letter G tattooed on my forehead, to show the world I am carrying the burden of blame. I know in my mind, it’s irrational that I should feel guilty about a lot of things; but I am unable to convince my heart otherwise.

I wasn’t sure exactly what I was going to write about on the subject of Guilt. I was just going to do a generic one, but this is to be a soul-searching experience. So soul-searching I went.

I have carried the burden of guilt for as long as I can remember. My mother suffered from manic depression, which in turn kept her in turmoil. Thankfully as an adult I was able to come to terms and understanding about her and her illness and the effects that it had on my life. I remember feeling guilty as a small child, because I was always sickly. I came into this world an extremely premature baby weighing 2 pounds and 1 ounce. I spent months in the hospital causing extreme emotional strain on my parents along with financial burdens. I felt guilty for the financial burden my birth had placed on them. I felt guilty for surviving when my twin brothers had died three years prior to me. I felt guilty for being born a girl. This guilt was placed on my shoulders un-intentionally but placed there just the same. My health caused many burdens for my family for many years.

In my early teens I began suffering from severe stomach pains, most the time it was considered to be a way to get attention or because I was a sensitive child. I was and still am a very tender-hearted and sensitive person. This for me was the defining moment in my life that would carry until today. Suffer in silence, don’t make waves, don’t trouble anyone with what is bothering you, and deal with it your self, because no one is going to believe you any way.

One evening I was found on the floor curled up in a ball, in so much pain that no one was able to straighten me out. I was crying and trying not to show any emotion because I didn’t want to upset anyone. I was told that I shouldn’t go to such extreme to get attention. I was in the hospital for several days, they weren’t able to find out the cause of my pain, but said it was some form of epilepsy. It would be years before I was diagnosed with Irritable Bowel Syndrome due to Ankylosing Spondylitis. I carried that burden of guilt for a long time among many others.

I was a young teenager when I got pregnant and married, another burden of guilt I carried for bringing shame upon my family. I struggled being a teen mother and taking on adult responsibilities while secretly dealing with my aches and pains. It would be thirty-two very difficult years of struggling with health issues that no one could make sense of before I would be diagnosed with Ankylosing Spondylitis. I felt guilty for not being the happy young girl my husband fell in love with. I felt guilty that I wasn’t able to be more involved in my daughter’s activities.

I did the best that I could during that time. I am remorseful knowing it wasn’t enough. I am still struggling to forgive myself. I know that it couldn’t be helped but it doesn’t change the fact deep inside I feel that I am a failure when it comes to being a mother and a wife. There were times when I couldn’t so much as get out of bed for days with no explanation except that I was just lazy. I used to tell people I feel as if I have been unplugged and blood should be draining out of my body.

I feel guilty because my husband didn’t sign up for this, he married a happy, vibrant young girl who turned into a woman who looks four times her age and he has to wonder every time he looks at her, what is she mad about. I didn’t even realize that I always look mad. Just yesterday we went to the doctor and he joined me. We were discussing some serious medical issues I am dealing with at this time; the fear in his eyes was easy to see. I mentioned to him that I hoped he forgives me for everything I have put him through over the years, he said honey I know you are sick and it’s not your fault. I told him I was sorry and I hated the person I had become. He told me it isn’t that hard and I understand why you are bitchy most the time. My heart broke at that very moment not because he said it but because it was true. I stood up and said I wanted to leave, not that I was angry but because I was devastated and heart-broken. He got upset and asked me to forgive him, which I told him you can’t ask forgiveness for speaking the truth. I told him why are we bothering trying to keep me alive, why do I bother going to the doctors, all we are doing is prolonging the Ankylosing Spondylitis Monster. I said why? He said because I love you, I will die without you and I need you, you are my life. I sat there quietly crying waiting for the doctor to come in. The guilt of the burdens that my disease has placed on a person I love more than life it’s self may be a guilt that I never recover from.

When we decided on the topic of guilt I was unsure what I would write about, but there was one memory that kept coming back and haunting me. I was unsure if I would share it here in this blog. I have decided to for several reasons, one to remind us all that life is precious and fragile and we are not guaranteed tomorrow. To remember to take advantage of every second of our lives, even during the worst of times. One day even those moments will become a precious memory to you.

A long time ago my nephew and his wife were expecting a baby, a little boy they planned to name Jesse James. Seems my nephew was a big fan of out laws. In our family each new life that comes into our group, is blessed with a mob of over happy people waiting to say Howdy! Welcome home! This occasion would be no different, we always meet at the hospital all waiting for our turns to kiss and hug and rock the newest member of the clan. I was running late to the hospital and when I arrived it was not to joys and laughter but to silence and tears. I stood there quietly at the door trying to make sense of what was happening. There was my nephew and his wife in tears hugging each other. Finally Jesse James grandmother noticed me and walked over to me and said,He died. He didn’t make it, Cookie.

Emotions ran rapid through my mind, how could an innocent child die. Why are cruel people allowed to live? How in God’s name could I have wished so much of my life away? I walked over to the young parents who were grieved stricken and in fear of the unknown and asked them where the baby was. They pointed to the bassinet in the corner and I walked slowly over to him. I stood there looking down at a small lifeless body of a dark-haired baby boy. I reached out and gently stroked his temple with my fingertip, so sad that I couldn’t even react.

After a long time standing there I finally asked them if I could hold him.  I could tell they were shocked, appalled and grateful. I smiled and said in broken tears every baby that has come into our family has had to suffer hearing my singing as I rock them and welcome them to our family, and Jesse was no exception.  That is exactly what I did. I sat in a rocking chair in the corner and softly sang and rocked Jesse James and welcomed him to our hearts. When I was finished, I placed him in his mother’s arms and we began loving this little soul we would never have the honor of getting to know. Days later I was asked why I rocked him and sang to him. I said because I didn’t want him to tell God when he got to Heaven, that we didn’t love him while he was here.

I struggled with the guilt of knowing that more times than not, I didn’t wish to live the life I was blessed with. I carry the burden of guilt knowing that I struggled with thoughts of suicide. I struggle now with guilt, that I was given the gift of life and failed to appreciate it properly.

Every day since Jesse was born I carry him inside my heart, reminding myself you must appreciate your life and live it to the best ability you can.

I am not a perfect person. I am not a perfect wife. I am not a perfect mother. I am not a perfect grandmother and that is a burden of guilt, I will have to learn to forgive my self for.

I tell my self every morning and every evening the key to Happiness is forgiving your self for being human.


Guilty, Until Proven Innocent By Kelly

Posted in The Blogs By Kelly, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

On June 6, 2011 I faced just one of many judgement days.  Most people are only judged one time, before God when they pass.  However, people who live with chronic illnesses are forced to prove themselves on a daily basis.  When I was given my AS diagnosis I learned from that day on that I was always going to be guilty, unless I was able to prove my innocence.

You see, on that day in June I woke up in the middle of the night in excruciating pain.  Now I live with chronic daily pain, so when I wake up in the middle of the night because of acute pain I get nervous.  This particular night the pain was so severe that I knew I couldn’t just deal with it, so after debating with myself for about an hour I made the decision to go to the ER.  When I arrived at the ER there wasn’t another person there, so I was immediately taken back and put in a room.  My blood pressure was sky-high and the dr told me they could not give me anything for my pain until I went for a CT scan.  For the record, it is extremely hard to lay flat and still while you are in the worst pain of your life.  I never thought I would get through that scan, but I did, and when they got me back to my room I asked for something to get rid of the pain.  I was crying, vomiting, having hot and cold flashes, and I just knew I was passing a kidney stone.  The dr gave me something then left.  Well that something was not enough and my pain didn’t wane at all.  Instead it seemed to get worse, and when I asked for a different medication I was told no.  My husband then tried to go to bat for me, and the dr decided to tell him no as well.  She told him that she knew I was here only to get drugs.  Yep.  Apparently this dr had figured me out.  She had known me for all of 5 minutes and she already knew that I was a drug addict.  I purposely woke my two preschool children up at 3 in the morning, woke up my father so he could watch my kids and then forced my husband to rush me to the ER because I just HAD to have drugs.  Why is it that I am automatically guilty of a crime because I can’t handle the pain my body likes to put me through?  Would this dr have acted the same way if I had been her daughter?  What if I had never been given a diagnosis, and didnt take medications at all, would I still be drug seeking?

Luckily for me the pain started to subside on its own, and I knew the second I passed that kidney stone.  I wasnt quite back to normal pain levels, but close enough, so I asked to be discharged.  The nurse told me that the scan was normal, and that there was no evidence of a kidney stone.  The dr did not say another word to me, so I left and life went on, until yesterday when I picked up my CT scan report from that ER visit.  When I opened the envelope I almost began crying.  Right there on the paper it said there were several large stones in each kidney, and that I also had a large umbilical hernia, and the biggest shocker was that I had fatty infiltration of the liver.  I had to read that report about 5 times before it sank in.  This ER doctor sent me home making me and my husband believe that there was nothing wrong with me, that the pain I had was probably from my AS, when in reality I did have stones that were passing, and my liver was in bad shape.  I have never once been told my liver was not healthy.  How in the world can a dr take someone else’s life in their hands?  Had I not picked that report up who knows how long it would have taken for me to find out that I had fatty liver?  How many stones would I have passed?  What ifs continue to float in my head and they are all scary. Instead of that dr upholding her oath to help others, she judged me.  Not only did she peg me as a drug seeker, she also did nothing to help me get better.  Her job should have been to tell me the results of the scan and to give me steps for getting better.  She should have been compassionate, she should have tried to walk in my shoes for those 5 minutes.  But that is not what she did.  Instead she added another cut to my soul.

I will have this disease until I die.  It is lifelong, chronic, painful, and it has no cure.  If you take your sick pet to the vet’s office they will immediately give your animal something to make them comfortable.  That day I was not even given the same treatment a dog would have been given.  Where in the Hippocratic oath does it say it is ok for doctors to pass judgement on their patients?  Where does it say that it is ok to assume the person sitting in front of you writhing in pain is faking it?  Why do I have to prove to every dr that doesn’t know me that this disease is real, as is the pain.  I did not ask for this life, for this disease and its complications.  All I have ever asked as an AS patient is that my doctor’s do their best to make my life as comfortable as possible.  Sadly they have mostly done the opposite.  I am a slave to doctors now, and I will always be.  My acute pain may come and go, but my chronic pain will be with me every minute of every day, and I should NOT be punished for being sick.  If I walked into that ER and told them I had cancer I would have been treated differently.  As a patient all I ask is that medical professionals treat me the way they would want to be treated.  I want the same treatment they would give their own daughter, mother or spouse.  I will try my best to suck it up and deal with the symptoms to the best of my ability, but if I have to go to the ER because it becomes too much, then please don’t judge me.  Dont assume you know what my life is like, or that you know who I am.  I am only guilty of having a disease.  I am only guilty of being selfish enough to not want to hurt anymore.  If you want to judge me because I choose to take medications that take my pain away and allow me to live a somewhat normal life, then that is your problem not mine.  I will never be ashamed or feel guilty because I have to take medications to stay active.  The medical profession has made so many leaps and bounds when it comes to therapies and medications and tests, but to me, it seems like they are all stuck in the dark ages, because very few actually act like people.  Very few treat their patients the way they should be treated.  Instead those of us who are sick have become bothersome, annoying, and something that is cutting into their lunch break.  Let’s just say that I wont be going to the ER ever again….

How Do You Plee? Guilty Or Not Guilty? By Ricky

Posted in The Blogs By Ricky, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

For the 1 in 200 men, and the 1 in 500 women that suffer with Ankylosing Spondylitis(AS) in the UK, guilt is something that plagues us as much as pain does at times. Take my day for instance, guilt, self pity and loathing was the common theme throughout. For the sake of this post lets just stick to the guilt, don’t want to spoil you too much.

To start off I am going through a rough time at the moment, which unfortunately has meant I haven’t been to work all week. Now I’m not claiming I enjoy my work so much that I wish I was there, but nor do I hate my work and glad I wasn’t. I work with a small team of people, so when I’m not there the extra workload for my colleagues is greater. I hate this! We often talk about AS being an invisible illness, and how people sometimes don’t understand that yes we are ill even though we don’t look it. For me this works both ways. The days I can’t walk as my pain stops me from weight baring, there is no guilt. However on the days like today, when I can walk, I can carry out “normal” day to day functions there is most definitely guilt. Deep down I know I couldn’t fulfil my work responsibilities safely, but the combination of my need to be in control, stubbornness and caring nature just accumulate to amplify my guilt.

Now reading that you may say I am justified for feeling guilty, or you my be of the opinion that I shouldn’t feel guilty as it’s something out my immediate control. Whichever your view, does guilt always have to be substantiated? Is it not part of human nature to be this way. Guilt is part of our complex system of emotions that make us unique. I’m sure you’ll tell me if I’m wrong, but doesn’t each one of our emotions serve the biological function of self preservation? Emotions like anger, fear, love and contempt are pretty straight forward in there role in self preservation. But what of guilt? What function does this fulfil? Apart from making us feel pretty shitty, and increasing our already elevated stress levels.

There are several other things that made me feel guilty today. Although, as open as I am they are too personal to share. What I will say is, isn’t it amazing how several little feelings of guilt add up to more than the sum of their parts? Or is that just something I experience?

So can guilt be turned into a positive? I’m intrigued to know your thoughts.

Feelings Of Guilt By Robert

Posted in The Blogs By Robert, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

Feelings of guilt can take on many forms when living with a chronic illness. I often agonise with myself when i look to the future and worry about whether I will become a burden to my family, when i can’t accomplish the things that i would like to do without having to ask for help.

I’m a very independent person and find it difficult to fully open up and ask people for help. It is a topic that I’m having to learn to come to terms with as I have to admit defeat now and again and keep reminding myself that somethings I just can’t do all by myself and not feel guilty when reaching out for help.

Looking back over the last ten years since the onset of symptoms from the early back pain and fatigue i am reminded that i have drifted apart from many good friends due to becoming less active and social than i used to be. There have been many occasions when I had to cancel evenings out drinking with friends or going to an event through tiredness and pain. Back before diagnoses I would start to think “maybe I’m just becoming a miserable old bugger” after a certain number of times of continually cancelling on friends the invitations start becoming less frequent. I feel guilty that these friendships were allowed to deteriorate before I knew the reasons behind my lack of involvement.

I have always been someone that has been, and always will be there to help out friends and family as that is my nature. It is my hope that I will still be able to take pleasure from continuing to help to the best of my abilities when people require it of me. This can be from a comforting word or a sympathetic ear and learn in time to be able to accept help from others for my own problems as easily as i give it with the feelings of guilt. In a way i should hopefully rationalise in my own head that the scales of the universe can balance themselves out. Or as Earl discovered in My Name Is Earl, Karma works both ways.

Being physically unable to do everything we once did, does not stop us from still being able to help in other ways. By helping out our friends and loved ones through support and love we can learn to not feel so guilty with our internal demons when we have to reach out for help and support in return. It is my hope that I can concentrate my efforts in becoming a more outspoken activist in the Ankylosing Spondylitis community and help newly diagnosed spondys to come to terms with the swirl of emotions that can overwhelm you when you become sick so they are more prepared for the mental as well as physical challenges that await.

We shouldn’t feel guilty when we can’t do things, we are not lazy or non caring people. Illness is by it’s nature restricting us from doing everything we would like.


Guilt; Such A Little Word That Encompasses Such A Lot! By Jackie

Posted in The Blogs By Jackie, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.
Many of us with Chronic illness suffer from guilt in many forms, e.g. guilt when you have to cancel appointments at short notice when you aren’t well enough to attend; guilt when you do make it out but feel you are the nuisance who needs to be able to get a seat and that you don’t have miles to walk to reach the toilets; guilt when you feel you are having to ask too often for assistance just to do ordinary everyday chores; guilt because you have to cause extra expense to pay someone to carry out the jobs you can no longer manage; guilt when you look around your home and realise that you need a shower, the bathroom needs to be cleaned, and a pile of ironing is waiting, knowing you have to chose the 1 you CAN manage, and the rest will have to wait; guilt when you see the shabbiness in your home, but as you can’t afford a decorator, it is renamed shabby chic. I could go on, but you get the picture!Then we can move to the workplace: guilt when you are afraid others might feel you are not pulling your weight; guilt when you know you have had a bad night and so you will not be firing on all cylinders, but you must go in; guilt when you do have to stay home sick as you know others have to cover for you……I find there was a constant battle to find a good balance in my life, but I am afraid I failed miserably as I now have virtually no social life, and have not been on holiday for several years. Why? Guilt; because if I want to enjoy myself and not be a burden on others, I need so much organisation to make sure I am comfortable. I need a plan of how to get there and back and I cant cope with long lines queuing.

I live in Edinburgh and I used to love the summer when the city comes alive with the tourists then the various festivals. However, most of the venues require you to queue outside as no seats are book able, the shows, in particular some of the comedy ones, are on late at night, which in another life was no problem, as I live in a fairly central location, we would simply walk as it would be after the buses stopped running and there would be few taxis around. Not now, so either I am a complete nuisance to everyone, or simply stay home. I cant cope with the payback when I am not sensible, these days.

Because I try to be cheerful and smile etc – I found before I became as bent as I am now, that people would not necessarily think I had a chronic illness, so sometimes I would get strange looks from people when friends would make sure I had a seat etc, at least now I am very bent and need a stick, it is patently obvious there is something far wrong, so I don’t have the guilt making me feel the need to explain – strangers don’t need the details, they can now see as much as they need to know!

So really the bottom line is that I find there is a terrible feeling of guilt as my chronic illness affects so much of my life, and therefore the lives of everyone else around me. In my case this has meant a virtual withdrawal…from life, the guilt is too great.

Chronic Disease And Guilt By Meloni

Posted in The Blogs By Meloni, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

Everyone at one time feels guilt. Guilt can actually be so bad that it can consume you! Living with a disease such as ankylosing spondylitis I’ve had feelings of guilt such as feeling as if my family is suffering because I feel bad or can’t do certain things. As I sit here and type this, I’m thinking that guilt and sadness for one with a chronic disease almost go hand in hand. I don’t think I have feelings of guilt as much as feelings of being sad. Sad that I can’t do something.

I can separate the two as well…I feel guilty that I wasn’t there for my mom when my step-father passed one week ago today. But, that guilt is not because of AS. I was where I needed to be, but at that time, I needed to be 2 people. That’s guilt but not A.S related. I feel guilty that I possibly have passed on this terrible disease to my daughter–this is A.S related—and yet at the same time that makes me sad.

Gosh–guilt is hard to write on! Maybe it’s so hard because it’s making me sad thinking of what I might be feeling guilty for.

I feel guilt that A.S came into my marriage. My husband doesn’t deserve it. My children don’t deserve it. And my future grand-children don’t either! I brought it to them because it’s in me. I wish it would leave but looks like it’s here to stay, so I will NOT let A.S have me. I will fight and fight.

I do know that those of us with a chronic disease do feel guilt/sad when we’re not able to do all that we want to do. We wish that everyone would understand, but we know that you can’t unless you’re in our body–but yet, we’d NEVER wish you experience what we LIVE through daily.

Guilt By Dana

Posted in The Blogs By Dana, Week 02: Guilt on July 18, 2011 by Cookie Has A.S.

It is that time again! It is time for the second MOWer’s Blog Carnival. The title is “Guilt.”  Now, I just wrote about guilt not too long ago, but it is something that seems to enter the lives of someone with chronic illness/chronic pain quite often. Actually, being human, we are the only animals that are faced with the feeling of guilt.  When guilt surfaces, it eats at our soul and resurfaces over and over again. Many times the guilt can make the illness even harder to bear.

I am currently faced with the guilt of not being a good enough wife. We recently had visitors for 3 weeks in a row–friends, then a friend, then my parents, then my mother-in-law, and then the rest of the family. My friend and her hubby and 2 kids stayed with us a couple days, and then went home, then my friend came back by herself so we could go to a concert. Then she stayed for my son’s baptism since she is the Godmother. Then my mother-in-law also stayed with us, and the rest of the family stayed in hotels. So family from out of town and friends that live in town came for the baptism on Sunday. The baptism and celebration to follow turned out to be wonderful, but the planning and getting all the food, drink, cake, and decor together was a lot of work.  Also, getting everyone together, and knowing that everyone was traveling from out of town to get here, was very stressful.  Yes, it all got done, and it was a beautiful ceremony and a lovely celebration. But when it was all done, and everyone left, I literally collapsed!

I slept all day yesterday whenever Michael was taking his naps. When he wasn’t napping, I watched him play on the floor with his toys or in his pack ‘n play or his jumper. Today, I slept again all day!!! My hubby acted like he didn’t even understand why I was so tired/fatigued/in pain. He wondered why things weren’t done, and he wanted to know how I was able to take care of Michael if I couldn’t do anything but lie around all day.

Here is where the guilt comes in…

I know I need to do laundry. I have sheets and blankets because we made up places for guests to sleep. I have regular laundry to do that I didn’t do while guests were here. I have regular cleaning to do and dishes. Now I need to continue with the normal everyday stuff~make bottles, make dinner, change diapers, feed Michael, feed my hubby, take the dog out, feed the dog, walk the dog, etc.  I can hardly do the normal daily activities, let alone anything extra from having guests for 3 weeks. My housework is so far behind, and I have no energy!!!

I feel so guilty that I can’t be a normal wife and parent!!!

The use of guilt here is not referring to the fact of being guilty of something, but to seeing or projecting my mistakes, while not knowing what to do about them or refusing to correct them. In this definition, guilt is a negative, paralyzing emotion, based on non-acceptance of myself or the situation, and it leads to depression and frustration rather than change or improvement. Guilt is usually a negative focus on myself: I am a bad person. I can’t bear myself. I am not worthy.

What can I do about it?
1 – Reflect on responsibility. Often it is/was not my responsibility or fault! Blaming myself for everything negative that happens is a form of ignorance and self-centeredness. Of course, if I am careless and intended to cause problems, then I should take responsibility for my action and see to it that I will not repeat this regrettable action. Instead, maybe I can do something to make up for it.

2 – Reflect on motivation. An act done with positive intention and without self-interest is not negative, although other people may be harmed by it. The suffering experience of others is strictly speaking the result of their own actions. However, we may have made some mistakes like wrong communication or insufficient attention, etc. If this is the case, it should just be a reason to change our habits by improving our communication or mindfulness.

3 – Changing or accepting. If you can change yourself or the situation, change it! If you can’t change yourself or the situation for a good reason, accept it! Not acting where we can and could act can lead to frustration and guilt in the long run; just like acting where we actually cannot do anything.

4 – Analyze the use of feeling guilty.  It is based in the present; it is intelligently concerned with the future effects of your recent actions; and it leads to remedying the damage already done and to caution about repeating such an act.

5 – Forgiving. Making mistakes is an inherent human quality: if you don’t make mistakes you are definitely not a normal human being anymore. If we are unable to forgive ourselves, we will never be able to properly forgive others.

6 – Reality check with others. If you can overcome your feelings of guilt and shame somewhat, try to discuss these matters with others and see if your reasons for feeling guilty are really valid.

7 – Emptiness. An ultimate cure for all delusions, realizing emptiness will also rid our mind of guilt.

In summary, try to transform the lack of self-confidence, ignorance and mental paralysis with repentence, purification, forgiving yourself, love and compassion for yourself, openness, reality check with others, and wisdom into positive action, fearlessness, and self-confidence. Believe it or not, this is based on Buddhism! They don’t believe there is such a feeling or emotion as guilt. So this is how they explain the human experience of guilt and repentence.  For Buddhists, they believe that guilt has such a prominent place because of the Judeo/Christian background of our culture. The concept of being born onto the earth with “original sin” – for which you personally are not even responsible – easily puts a feeling of guilt in your minds (I am bad, even without doing anything wrong). Furthermore, the presentations in several Christian traditions can give you the impression that you should feel guilty and ashamed. I believe that this type of guilt is a socially learned emotion. Tibetans do not even have a word for it! If that is correct, it is not even a basic human emotion, but a culturally –  imposed type of mental frustration; which means that you can relatively easily overcome it by un-learning this artificial emotion.