Once the person has been diagnosed with lupus, it is usual to have too many questions and go through various emotional phases. How someone reacts to the disease varies from person to person, from complete refusal to accept the condition, to aggression or even depression. These phases keep changes with time, and finally, most people do accept and adapt to their ailment, armed with better knowledge. But this adaptation process seldom occurs once, it is rather a continuing process(1).
Guilt is one such feeling, which many people suffering from lupus have to tackle. Before we dwell deeper into the subject, let us first understand what is the guilt and its common causes. As per oxfords dictionary, guilt is “Culpable of or responsible for a specified wrongdoing.” It may seem obvious that why a person should blame himself or herself for a disease like lupus, yet, it is quite a widespread phenomenon.
How people feel guilt
Things are not as straightforward as mentioned in medical books, people often have varied views about the diseases, after all, we are an emotional being. Our understanding has lots to do with our beliefs that are embedded deep inside us. Such beliefs are difficult to uproot. Thus everyone has a different reason to believe the origins of a particular disease and lupus is no exception. Some people may blame their previous lifestyle for lupus, while other may think that acts done in earlier life may have something to do with it (2). While others may have a more rational approach, and they may still have the feeling of guilt. Just an example; women may feel guilty for not agreeing to some marriage proposal she got several years before being diagnosed with lupus or a miscarriage that happened a long time back.
Guilt is more widespread than we think and it is often not alone, but rather associated with several other toxic feelings, like blaming oneself for something, feeling ashamed. As the treatment for a disease like lupus becomes better, it is less threatening to life and has become a chronic illness in a true way. Therefore, as with any chronic illness, various mental and emotional problems overwhelm a person from time to time.
When living with lupus it is important to have a well thought out plan to overcome the menace of these various negative thoughts and to overpower them quickly. In the age of information, apart from healthcare workers and close friends, internet often serves as a good source of acquiring the knowledge and tools for this purpose. There are many people sharing their personal narratives, expert advice and experience of positive transformation (3). In this article, we try to give you some practical tips to achieve your objective of overcoming the feeling of guilt.
Guilt must go
There is no good in letting the guilt keep dwelling deep inside you for long, such feelings would only keep you back, disturbing you to live the life fully and keep moving forward. Though there is no sure shot way of doing it, we all have to find the way of according to our problem and personal nature, here we recommend some of the strategies, that work for most people. So no excuses, get started, and take control of your life;
You did nothing wrong
Whether you are a believer or atheist, you got to understand that even the best of the specialist cannot say for sure about the causes of lupus. What we know is that it is caused by a combination of several reasons and is an autoimmune disorder. Stress and feeling of guilt would only exacerbate the flares. So take a deep breath, and promise yourself that you will stop blaming yourself, from this very moment.
The world is always waiting for you
There is nothing ever late or early in life, it is we who decide the timings. The feeling of blame and guilt keeps us back from being open to the world and people around, often resulting in self-imposed isolation. But remember that socialization is the biggest confidence builder, once the people start socializing they realize their worth and discover that they are wanted and appreciated more than they ever thought. So do not keep others waiting for you, go and join the fun.
Well, this subject needs no introduction. If you believe in something, then it would be a good idea to practice your faith. Spirituality and faith have been shown to make people stronger, positive, self-believing and healing.
Attack the base of the guilt
Feeling of guilt usually builds itself over a long period, and has some strong reasons associated with it. So you need to dive deep inside your soul and find out the reasons for this guilt, it could be anything from broken relations to not opting for acertain job offer. There maybe things that you want strongly in life and guilt may be keeping you back.
To demonstrate the concept let me share with you some personal experience of Sarah, she wanted to have a child, when she was 31. She has been struggling to overcome the feeling of guilt since she had a miscarriage about two years back. Though it was not her fault, she could not get rid of thinking about it, and her strong wish to have a child kept the feeling of guilt alive and thriving. She kept thinking about the past, and blaming herself for not doing enough, or thinking that somehow she could have avoided that miscarriage. One day she decided to talk to her husband on the subject, and he said that they could have a child after 2 years. At first, she was shocked, that she has to wait for so long. But after a while things changed for her, she could overcome the feeling of guilt, as she had the realistic deadline and time to prepare. She later went on to write a book and share her experience of living with lupus (4).
So what we learn from this case, is that if you cannot let certain kind of feeling go, then better set the realistic deadlines, that will relieve your stress.
Get some healing tools
That would not only keep you motivated and busy but would provide you with lots of practical tips on overcoming the feeling of guilt and self-blame. These tools could be a collection of books on lupus, videos, artwork, inspirational music etc. It may not have to do something with lupus, you may buy a video course of yoga, or just collect information from online resources and start practicing it.
Whatever the method or path you choose, just remember that guilt must go. It is a feeling that is like mental cancer, that keeps eating you from inside, making you weaker and preventing your growth. Once you are relieved from this feeling, you will feel energized. The feeling of guilt remains inside you because you try to be your own judge and jury. But remember that most often we have quite a distorted view of our self. So stop judging yourself, rebel against this feeling of guilt and rebuild your self-esteem and life.
- Charmaz K. The Body, Identity, and Self: Social Q. 1995 Sep 1;36(4):657–80.
- Taïeb O, Bricou O, Baubet T, Gaboulaud V, Gal B, Mouthon L, et al. Patients’ beliefs about the causes of systemic lupus erythematosus. Rheumatology. 2010 Mar 1;49(3):592–9.
- Miles A. Of butterflies and wolves: enacting lupus transformations on the Internet. Anthropol Med. 2009 Apr 1;16(1):1–12.
- Gorman S. Despite Lupus: How to Live Well with a Chronic Illness. Sara Gorman; 2009. 70 p.
- Lupus is an autoimmune disorder, and there is no way it could be anyone's fault.
- Feelings of blame and guilt keep people from being open to the world and people around, often resulting in self-imposed isolation.
- Feelings of guilt usually build over a long period, and have some strong reasons associated with it.