Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.
-Edwin Hubbell Chapin
Halima was ecstatic when she found out she was pregnant with her first child. She had wanted a baby as long as she could remember and couldn’t wait to meet her unborn son. She would daydream about him being a leader of the believers and wondered if he would memorize the Qur’an or help the Ummah in amazing ways. Immediately after she gave birth, her baby unexpectedly had to be rushed for emergency heart surgery. While still recovering at the hospital NICU, a doctor came by to tell Halima that all the testing had come back and her son had a rare genetic disorder. The syndrome was not curable and although doctors didn’t know her baby’s prognosis yet, it was likely that her child would have severe physical, mental, and psychiatric issues for the rest of his life. Her son was going to have special needs, would very likely have to go to a special school, and would probably need extra care even as an adult. Halima was completely devastated. This is not what she imagined for her child at all. How could this have happened? There were no genetic disorders in her or her husband’s family, and her pregnancy had been uneventful. Halima kept asking herself if this was her fault until she started to believe it. She began to think she must have done something wrong during her pregnancy. Perhaps it was something she ate or medicine she might have taken. As the weeks passed by and her baby grew, she also started to blame herself if anything didn’t go as planned with him. If he didn’t eat enough, had the sniffles, or was crying more than usual, she would blame herself for not being a good mother. She agonized over her child’s health and wondered if on the Day of Judgment she might be held accountable for causing her child any pain. Halima fell into a depression making it very hard for her to take care of her baby. Every morning Halima would wake up with a massive invisible weight on her chest and think, “Everything is my fault.”
What is happening to me?
Unexpected events can knock the wind out of us. When we build up expectations of ourselves, people around us, or things to come, a part of us begins to live in our future dreams. Yearning for what is coming and fantasizing about what lies ahead helps us get through our mundane lives. These dreams inspire us and motivate us to be better versions of ourselves, with our families and even with the world. When these expectations don’t develop or materialize as expected, all those intense feelings of hope and longing feel like they are crashing down all around us. Hope is one of the most powerful emotions a human being can have and when snatched away its loss can be a very painful and traumatic experience. For the person already living with a particular fantasy in their mind, the jolt back to reality can feel like a part of their world has been ripped away from them.
Dreams that don’t turn out as expected might include:
- A job you worked very hard to get, maybe even took years and years to get promoted to, doesn’t pan out.
- A marriage you had very high hopes for, and perhaps waited for all your childhood and young adult life, ends in divorce.
- A baby or child who you envisioned would mature a certain way develops an illness or condition that changes the trajectory of your family’s life.
Understanding your thoughts and emotions
When something major happens that impacts our lives in unexpected ways, one of the first things our brain does is ask two questions:
1. What just happened?
2. Why did this happen?
We are wired for survival purposes to ask “why” when something bad happens. This protects us from making the same mistake twice. It’s also our brain’s way of making sense of unexpected events. If unexpected things happened to us all the time, we would not be able to cope with day-to-day life. For example, if you thought you could get into a car accident randomly at any given time, you would probably not drive. However, if you attribute car accidents to faulty car parts or bad driving, you are more likely to continue driving because you know that if you monitor these causes, your risk of an accident will decrease dramatically. This is why when we are ill and go to the doctor the first thing we want to know is, “Why is this happening to me?” And this is why when something bad happens, our first instinct is to ask, “Who or what caused this?”
When unexpected events occur, we go through an appraisal process in which we review all variables that led to what happened, including our own actions.
Could this have been prevented?
Maybe I caused my cancer with unhealthy eating habits.
Was this my fault?
Perhaps my child has autism because I painted her nursery while pregnant.
Was I negligent?
Maybe if I had double-checked everyone’s seat belt, then my nephew would have survived the car crash.
Taking responsibility for one’s actions (accountability) is one of the most important attributes a person can have. It’s integral to understanding the law of cause-and-effect, being able to reflect on one’s mistakes, and accepting responsibility when things go wrong. A healthy individual will engage in this skill to maintain wellness, redress wrongs, and prevent undesirable things happening in the future. Holding oneself accountable is a healthy way of thinking and is different from self-blame. Self-blame and self-criticism involve accepting fault with the main purpose of making oneself feel bad or punishing oneself.
Where does self-blame come from? Early in childhood, children are very egocentric which means they feel everything revolves around themselves, and it’s difficult for them to see perspectives different from their own. Egocentrism never goes away completely but is more common during some parts of the life-span than others. As children mature, they begin to understand that not everything that happens is for them, because of them, or about them. It is very typical for a 7-year-old whose parents are experiencing a separation to think that his parents are getting a divorce because of him, whereas a 17-year-old can understand that his parents are getting a divorce for many reasons that have nothing to do with him.
Egocentrism can be affected by many things including parental affection and rejection. If a child does not successfully navigate through egocentrism because of environmental factors (bad parenting, bullying, trauma, etc.) he or she may have more difficulty with unsubstantiated guilt or self-blame than the average person when he or she gets older. Lack of development in this area may lead a person to feel guilty for things not within their power, take blame for things that are not their fault, and even take blame for other people’s mistakes.
Children who come from families with high conflict and trauma often feel responsible for circumstances that have nothing to do with them. Lack of appropriate boundaries in families can also lead to unnecessary feelings of guilt. In a healthy family, members are interdependent, meaning they have autonomous identities but they rely on each other and function better when connected with each other. If family members are enmeshed (overly reliant on each other) or have weak boundaries between them, there can be high risk for emotional dependency and confusion about accountability. Some examples may include:
The oldest sibling gets punished for something their younger sibling did just because they are the older sibling.
A young child gets blamed for causing a fight between her parents when the parents should have enough insight, discipline, and self-control to work through their conflict.
A young girl tells her mother she was molested by a family member and, instead of taking action against the perpetrator, the mother blames her daughter.
Many people who suffer from self-blame can trace that critical voice in their head back to a particular parent or authority figure (like a teacher or caregiver) who may have meant well in teaching the concept of accountability but did it in the wrong way. For example, if you did poorly on an exam they might have said to you:
“You didn’t do well because you are lazy and didn’t study,” instead of “Why do you think you got a poor grade? Let’s look into what you can do differently next time.”
Another example might be:
“Nobody likes you because you cry all the time,” instead of “Sometimes it looks like you might have a hard time managing your emotions; maybe we can work on that together.”
“Stop eating so much junk, if you are fat now it’s going to be even harder to change when you are older,” instead of, “I think we need to replace all the junk food in the house with delicious fruit and vegetables so we can all be healthy together.”
In all the examples above, the first statements are designed to make a person feel bad in order to motivate them to change, whereas the second statements offer feedback for the purpose of growth. Both statements aim at changing behavior, but the first uses emotional pain as a motivator instead of fostering intrinsic motivation (wanting to do something because you actually want to do it vs. avoiding some kind of punishment). When children, who are very impressionable, hear negative statements like the ones above repeatedly, they can begin to internalize their parent’s critical voice. This critical voice can become part of their internal script for how they tend to talk to themselves when they grow older.
Changing your mind, body, and heart
If self-blame appears to be a recurring theme in your life, or perhaps emerged after a recent major change, consider reflecting back on your childhood to see where this thought process might have developed. Take time to contemplate:
When you made mistakes as a child (which we all do), how did family members treat you? Were authority figures supportive or did they reprimand you?
Did anyone call you names or put you down?
If something bad happened in your family, to who or what did family members attribute the cause?
When your parents did something wrong, did they beat themselves up over it? Did they blame each other? Did they blame you?
While negative self-talk often develops in response to early experiences, it is also a common technique of Shaytan. Shaytan uses self-blame to demoralize people and push them to the brink of questioning the qadr of Allah. While it’s very normal to ask why certain things happened, Shaytan sometimes leads us to forget that some things in life are destined to happen and that no amount of preparation can deter the inevitable. Some events happen because of things we did, and sometimes things happen because they are part of a bigger picture that we may not fully understand.
An excellent way of internalizing the concept that hardships can be a part of the bigger picture is reflecting on the Prophets (peace be on them all), who are the best of mankind, and their ongoing struggles with poverty, death, assault, imprisonment, rejection, etc. Prophet Muhammad (peace be upon him) faced many difficulties including being orphaned, war, extreme hunger, physical violence, emotional abuse, and persecution. Prophet Yusuf was thrown by his brothers into a well to die, became a slave, and went to prison. Yet we never blame them or attribute these misfortunes to their sins. These were all events that had a purpose in the lives of the Prophets as well as the Muslims that came after them.
Your answers to the questions above might help you discover where some of your unhealthy thought patterns might have come from. Once you have identified where they originated, you can begin to gently repair that way of thinking by inserting healthier messages about yourself. It might feel unnatural at first, but over time you can re-write the negative script in your head with a more positive one. Every time you think in your mind or feel in your body that you are responsible for something that you are not, try the following:
- Sit down in a quiet and comfortable space alone. Keep your eyes closed.
- Identify where on your body you feel tension when you are engaging in self-blame.
- Begin structured breathing (breathing in for 3 seconds, holding it for 2 seconds and then exhaling for 6 seconds).
- Gently visualize coming face-to-face with one self-blaming thought at a time. Let the thought come to you and challenge it with an opposite statement (Examples: “This is not my fault,” “There is a silver lining to every cloud,” “If I could go back in time and change things, the outcome would still have been the same,” etc.). Repeat this process for each self-blaming thought.
- As you address the negative thoughts, allow the tension in your body to release as you exhale. For example, if you feel tightness in your neck, imagine your negative thoughts and the tension dissipating as you exhale the air out.
Another technique you can use if you have an internalized voice from someone in your past is to visualize the person and remember how those negative thoughts are from them and not you. In your mind, imagine your negative thoughts are real words you can hold in your hands. Take all those negative thoughts and put them in as a big a basket as you need. Visualize handing that basket of words back to that person and telling them you will not hold on to them anymore. Then create distance in your mind from that person by walking away. If you catch yourself in the future using those negative words, repeat the exercise.
To help reinforce these concepts on paper, you can write down your thoughts in an unhealthy thought dump and repair activity. Fold a piece of paper in half vertically. At the end of the day reflect and write down all the unhealthy negative thoughts that passed through your mind on the left-hand side. On the right-hand side directly next to the unhealthy thoughts write down healthier versions of those same thoughts.
Research indicates that expressive therapies, including art therapy, can be very healing for those who have experienced certain types of trauma. If you are artistically inclined, consider using art as a medium to express your hurt, sadness, anger, and frustration in healthy ways. Transformative art, or artistic activity aimed at productively reconstructing thoughts and feelings, can be especially therapeutic.
- Get a large piece of paper and a crayon, marker, or paint color that accurately expresses how you feel. The color red is commonly associated with trauma, but you can use whatever color you feel best captures what you are feeling.
- Write down all your self-blaming thoughts. Write as messily, creatively, or neatly as you would like—there is no wrong way to do this.
- Pick another color to scribble, color, or paint over those negative feelings. Address your frustration and pain by visually and artistically obliterating all your negative thoughts with this second color. Add positive thoughts or images if you would like.
- Transform your art into something that feels beautiful to you. Add additional colors or images to convert what was once a paper with difficult feelings to something that feels healing.
- Decide what you want to do with the art. You can keep it somewhere safe or discard it if that feels more cathartic for you.
Unique circumstances of complex trauma
Self-blame can happen with everyday stressors and minor traumas, but self-blame associated with complex trauma (long-term and/or ongoing trauma) warrants special attention. One of these circumstances, as illustrated in the case study, is the birth of a child with lifelong disabilities. Parents of children who have special needs can face a unique type of trauma. Many of these parents feel, although they know it’s not logical, that they could have prevented what happened or that they are somehow to blame for their child’s hardships. Some also feel a great sense of loss. We now turn to how overcoming trauma and grief may be slightly different for this population.
Stages of grief
When someone experiences a loss, they are typically expected to go through the stages of grief, which are: denial, anger, bargaining, depression, and acceptance. These stages are not always linear but typically involve the following reactions.
Denial: “This is a mistake, this can’t be happening.” In this stage, the person may be in shock or feel numb. The loss or trauma may feel like it hasn’t quite registered yet.
Anger: “Why did this happen to me!” “Whoever did this will pay.” Anger can be projected at oneself, others, or sometimes even Allah. For parents of children who have special needs many times this anger is pushed inward at oneself and turns into self-blame.
Bargaining: “Allah, if you fix this situation I will fast Mondays and Thursdays for the rest of my life.” “If I do such-and-such, maybe this can be reversed.” There is nothing inherently wrong with this phase, but this can be a person’s last-ditch effort to try and fix things before starting to accept what happened.
Depression: “This is all my fault,” “I’m never going to get over this.” Before coming to full acceptance, it’s not unusual to fall into a phase of depression. In this phase, there is a lot of sadness about the loss. For the parent of a child with special needs, this can be the loss of what is considered a “normal” lifestyle or the loss of what they envisioned for their child’s future. It can also feel like a loss of independence as the child will grow into an adult that may need them indefinitely or a loss of time in that the parent will have to put more effort into taking care of the child than would be expected of other children.
Acceptance: “I’m still sad, but have come to terms with what has happened.” This doesn’t mean that the person is ok with the loss, but has accepted the reality of the situation. For the parent of a child with special needs, this involves looking beyond the diagnosis to really see one’s child; it involves appreciating their child’s differences and loving them for being exactly who they are and were meant to be.
Moving back and forth through the stages of grief is expected with regular trauma, but the whole process is generally viewed as one journey. The stages of grief related to having a child with special needs, however, often look cyclical because the trauma unfolds over a long period of time and is ongoing. The acceptance phase can be short-lived; every time a parent goes to the doctor and gets new information about how his or her child needs extra care may lead them back to earlier stages. For example, a child might be born with a genetic syndrome, then at age 3 is diagnosed with autism, and then at age 13 develops psychosis. The new information doesn’t necessarily trigger the original trauma—it can initiate a new trauma. Additionally, every time there is an important life event that is expected to happen and doesn’t, the parent might find themselves going through the stages of grief from the beginning again.
Parents experiencing these struggles may simultaneously face both solace and difficulty in realizing that this cycle of grief might not end. It’s difficult to accept that the struggles are long-term, but knowing that the struggles are long-term also takes away from the jolting reality each time something new hits. When a parent expects to go through the cycle of grief only once, they may feel ashamed, guilty, or weak for “not getting over it.” Cultivating self-compassion and knowing that these feelings are expected to be cyclical can be a relief for some.
Coping with complex trauma and bereavement
Ongoing trauma is like being a traveler on a journey to a faraway destination. The trip is fatiguing and long; however, putting down one’s luggage and resting is imperative to keep moving forward. The journey ahead will still be there tomorrow and self-care is the only way to find the strength to keep going forward. Continuously walking on the journey with no repose will only lead to excruciating pain and exhaustion. Self-care doesn’t consist of extravagant or expensive things, but simple activities to keep oneself physically and mentally healthy. If you feel that this analogy accurately captures your experience, consider making your own go-to list of self-care activities, like the one at the end of this chapter, to help maintain wellness long-term. It is recommended that we have self-care activities in four different spheres of our lives: intellectual, spiritual, emotional, and physical.
Mindfulness is one self-care practice that can be useful in working with complex trauma. When there is pressure to figure out and cope with everything at once, slowing down and taking things as they come can reduce anxiety. You don’t need to figure out what life will be like ten, five, or even two years from now. All that you need to know now is that you are trying the best you can. When you do your best, Allah will take care of everything else—there is no purpose or benefit to agonizing over a future you can neither predict or control.
The practice of mindfulness involves learning to be fully present in day-to-day life through one’s senses. You can be present by focusing on what’s going on right now at this very moment. What do you see? What sounds do you hear? What do you feel with your skin? Perhaps your clothing or what you are resting on with your body. What does the temperature of the room feel like? What’s in your environment that needs your attention right now? You only have to figure out one thing at a time, so shift your attention to what’s in front of you. Orienting yourself to the present can decrease anxiety, which focuses on the future, and depression, which usually focuses on the past.
In day-to-day life, mindfulness involves paying attention to the small things. It may be smelling your child’s hair when you cuddle with them or savoring your food at dinner time. Mindfulness might involve enjoying nature as you walk around your neighborhood or snuggling up with a warm blanket. Mindfulness can also be a way of connecting to Allah by appreciating the faculties He has given you to experience His Creation. Bearing witness to the beauty of His Creation and the blessings around you can increase gratefulness.
Although being a parent of someone with special needs can be difficult, it is also tremendously rewarding. Some of the lows in the journey can be met with extreme highs of happiness, gratitude, and love for one’s child. Many parents feel that it’s an honor and privilege because Allah directly chose them for the task, and this honor is not for the weak but the strong. Keeping perspective can help a tremendous amount, and one way of doing that involves connecting with other parents who have similar challenges. These days there are many support groups available, in one’s local community as well as online.
Inspirational hadith and ayat for reflection
It was narrated that Abu Hurairah said: The Messenger of Allah ﷺ said: “The strong believer is better and more beloved to Allah than the weak believer, although both are good. Strive for that which will benefit you, seek the help of Allah, and do not feel helpless. If anything befalls you, do not say, ‘If only I had done such and such; rather say, ‘Qaddara Allahu wa ma sha’a fa’ala (Allah has decreed and whatever he wills, He does).’ For (saying) ‘If’ opens (the door) to the deeds of Satan.” (Sunan Ibn Majah, Vol. 1, Book 1, Hadith 79)
No disaster strikes upon the earth or among yourselves except that it is in a register before We bring it into being—indeed that, for Allah, is easy. (The Qur’an, 57:22)
Ubadah b. al Samit said to his son: “Son! You will not taste the reality of faith until you know that what has come to you could not miss you and that what has missed you could not come to you. I heard the Messenger of Allah ﷺ say: The first thing Allah created was the pen. He said to it: Write. It asked: What should I write, my Lord? He said: Write what was decreed about everything till the Last Hour comes. Son! I heard the Messenger of Allah ﷺ say: He who dies on something other than this does not belong to me.” (Sunan Abi Dawud, 4700)
On the authority of Abu Abbas Abdullah bin Abbas (may Allah be pleased with him) who said: One day I was behind the Prophet (peace and blessings of Allah be upon him) [riding on the same mount] and he said, “O young man, I shall teach you some words [of advice]: Be mindful of Allah and Allah will protect you. Be mindful of Allah and you will find Him in front of you. If you ask, then ask Allah [alone]; and if you seek help, then seek help from Allah [alone]. And know that if the nation were to gather together to benefit you with anything, they would not benefit you except with what Allah had already prescribed for you. And if they were to gather together to harm you with anything, they would not harm you except with what Allah had already prescribed against you. The pens have been lifted and the pages have dried.” (40 Hadith Nawawi, 19)
A. Unhealthy Thought Dump and Repair Activity:
Fold a piece of paper in half vertically. At the end of the day, reflect and write down all the unhealthy negative thoughts that passed through your mind on the left-hand side. On the right-hand side, directly next to the unhealthy thoughts, write down healthier versions of those same thoughts.
B. The Un-Blame Game
Just because you don’t have an answer to what caused the trauma in your life doesn’t mean the blame comes back to you. Write down all the reasons you feel guilty for a trial or difficulty. The more reasons you can write the better, even if the reasons sound silly.
1. Example: My son has autism because one day in my first trimester I had a migraine and took a Tylenol.
After writing the reasons as to why you feel bad, do a truth check and examine the accuracy of the above statements. Write down below, matching the number above, a fact that counters your irrational thought.
1. Example: The cause of autism is unknown at this time, but researchers believe it’s a combination of genetic and environmental factors. Many women take Tylenol during pregnancy. Taking a pain reliever was not the cause of my son’s autism.
If these truths or counter thoughts don’t feel genuine initially, that is ok. Turn them into affirmations and repeat them daily until they become internalized.
Self-care is important for everyone, but it is especially important for those who have experienced trauma, loss, or on-going hardship. Many people assume that self-care is something that has to be indulgent but this is a myth. Self-care activities are things you can do once a day or throughout the week that are healthy and help sustain or nourish you. While going to the spa and your favorite restaurant can be nice self-care activities every once in a while, they are not sustainable daily. Reasonable daily self-care activities include a 10-minute walk outside, savoring a nice piece of fruit, reading, speaking with a trusted friend, or making duaa after salat. Self-care is ongoing and should nurture different aspects of your life. Below, write regular self-care activities that can keep you strong in the face of adversity.
Self-care for your body (physiological):
Self-care for your spirit or deen (spiritual):
Self-care for your mind (intellectual):
Self-care for your soul (emotional):
Master list of coping skills
Coping skills are activities that we practice during times of stress. They help distract and can give temporary relief when feeling a lot of pressure. Although it’s ok to have one or two favorite coping skills, it’s better to have several. Below are a list of coping skills you can use when experiencing difficult feelings. Circle the ones that work for you and add as many more as you can.
- Cuddle with a pet
- Go to a park and smell flowers
- Stretch your body for 5 minutes
- Color a mandala or coloring book
- Go for a brisk walk or run
- Do tasbeeh
- Tapping (google emotional freedom technique to learn more)
- Sit outside looking at nature for 5 minutes
- Watch funny videos on social media
- Do something nice for somebody
- Toss around a ball
- Take a warm bath
- Drink tea
- Talk to a friend
- Organize something
- Talk to Allah about your frustrations
- Play with silly putty or play-doh
- Make a craft
- Meet up with friends to play basketball or soccer
- Write in your journal
- Write a poem
- Draw an abstract picture of your feelings
- Listen to nature sounds
- Practice deep breathing
- Practice your affirmations
- Hug a family member
- Squeeze a stress ball
- Take a short drive with the windows down
- Read Qur’an
- Count to 100
- Clean your room
- Read positive quotes online
- Eat a small, healthy snack
- Take a 15-minute nap
- Learn a new skill
- Do jumping jacks
- Do a puzzle
- Give yourself a facial
- Build something
- Make a blessings list
- Do a random act of kindness
- Try progressive muscle relaxation (do an internet search for “progressive muscle relaxation” to learn more)
- Visit someone sick
- Pray a sunnah or nawafil prayer
Case study revisited
Halima got a routine call one day from her son’s social worker. After holding so much sadness inside, she broke down on the phone and told her how she had been feeling. The social worker suggested that Halima finding out about her son’s diagnosis may have been a traumatic experience for her. Halima had no idea that the feelings she was experiencing were “normal” for someone who was experiencing traumatic grief.
Halima realized that a lot of her grief came from unhealthy guilt about her son’s condition. Halima’s parents were very critical of her as a child and made her feel bad any time something didn’t go as expected or planned. Over time, she became accustomed to thinking everything was her fault and when her son was born, it wasn’t difficult to fall into that same thought pattern. To help break this cycle, Halima made sure to take 10 minutes every day to journal and do the Thought Dump and Repair Activity that her social worker recommended. Halima felt like writing was similar to combing long hair; if she went a day without brushing her hair, it would get knotted just the way missing journaling would tangle her thoughts.
Halima knew that the journey with her son was going to be long and decided that the best thing she could do was take life one day at a time. She became determined that she and her son were not going to be defined by his diagnosis. To help manage the ups and downs of their day-to-day life she joined online support groups for mothers who have children with special needs. She also made sure to create a self-care list which included reading, yoga at home, crocheting, and doing tahajud once a week. Halima’s life was mostly dedicated to taking care of her child, but setting time aside for mindfulness and self-care on a consistent basis made her feel like her life was still her own. Halima believed that by taking care of herself she could better take care of her son long-term.
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