Being born with thalassemia major, a marrow disorder that inhibits the body from producing healthy red blood cells, is a very hefty burden.
From very early on, usually around the age of three, the inflicted child begins receiving chronic transfusions of other people’s blood to remain alive.
Transfusions occur every two to four weeks and require lengthy hospital stays, painful needle sticks, and scary environments containing medical equipment, unfamiliar adults, sounds, and other upset sick children.
Due to the recurring need for infusions of other people’s blood, iron begins to build in the child’s body.
Medicine, called chelation therapy, is required on a daily basis to remove the excess iron. Without this medicine, caustic iron deposits would eventually cause the child’s organs to decay and die.
Needless to say, life with thalassemia takes a lot of work.
And all of this work creates stress.
Yes, stress occurs because of the illness itself, but it also occurs because of the high nature of dependency the patient has on others for survival.
Dependency in thalassemia occurs in the form of:
- relying on friends or strangers to donate blood that matches their own blood type.
- relying on a job or the government to pay for their medical expenses.
- relying on a pharmaceutical company to stock and deliver chelation medication in a timely fashion.
- relying on the knowledge of medical professionals to properly test bodily functions and homeostasis.
Caring For a Child with Thalassemia
Watching a child struggle with a chronic illness that’s as painful as thalassemia can be heart wrenching.
Compound that feeling tenfold if you want to know what it is like to be that child’s parent.
A young thalassemia patient’s innate emotional response to receiving invasive medical procedures is to kick, scream, and cry to ward off the pain being inflicted onto his or her body.
In order to alleviate the child’s negative emotions, he will receive praise for bravery, gifts for stoicism, and/or he will be told not to worry because everything will be okay.
Sometimes children with thalassemia are smothered by their parents. They are taught that they are completely helpless without their family.
They learn early on that they require support and special attention that only their trustworthy parents can provide.
In worse case scenarios, the child is scolded for crying about his pain. He’s told to “buck up and get over it,” because after all, there are people far worse off than he is.
Adults say and do these things to ease their own pain and suffering surrounding their child’s illness.
The child must listen to the adult in charge of his care, because he knows that he cannot care for himself.
He will abandon his own emotional guidance system in order to make sure that he is provided for and kept alive with proper medical care.
When children grow up in an environment where adults train them to override their natural emotions of fear, sadness, and anger about their hospital appointments for feelings of happiness (e.g., from rewards like toys), or false positivity (e.g., being told to think happy thoughts), or guilt (e.g., being told others are worse off), or smothering (e.g., held on a tight leash with little ability to display independence), the child begins to conform and detach himself from his natural emotions.
Because, again, abandoning his instinct and moving away from his internal guidance system guarantees that he will satisfy the adult in charge of his care.
If he knows that the adult in charge of his care is happy, he will then feel confident that the adult will continue to provide him with the critical care that he needs to remain alive.
All too often, the natural fate of the child who is trained to abandon himself emotionally, as he continues to grow older into adulthood, is suicide.
Two Forms of Suicide
1) Actual Suicide:
Many parents of adolescents with thalassemia state that their growing child has abandoned their chelation therapy, even though he knows (but sometimes refuses to believe) that he will die young without it.
Chelation abandonment is how he attempts to assert his independence and create an identity for himself that is not aligned with any adult’s desires but his own.
This is how he attempts to find himself and regain dominion over what he believes to be an out of control life.
Most notably, too, abandoning chelation therapy is the easiest way for the child to revolt against the emotional void that he feels, but has no tools to cope with.
For those who have begun their descent into suicide by not taking their chelation medicine, please get help. Speak to a psychiatrist or therapist about the physical and emotional pain that is causing you to want to die.
Of course, you may not think you are committing suicide by not taking your medication, because you look healthy on the outside. Just be aware that your body is rotting away on the inside.
One last thing: you may believe that your parents abandoned you by attempting to mold or shift your emotions and beliefs to be something that they wanted, overriding all of your true wishes and desires.
This is most often not true. Your parents are simply doing what they believe is best for your at any given moment. They gave you love the way they knew how to love and the way love was given to them.
Try to understand life from their perspective if you want to reveal the truth. There is a very high probability that they were doing the best that they could to keep you healthy and happy.
Here is free a suicide prevention hotline if you need help dealing with your thoughts and feelings: 1 (800) 273-8255. http://www.suicidepreventionlifeline.org
Suicide also occurs when the young adult decides to remove himself from engaging in and experiencing life.
He does this by:
- giving up on goals.
- deciding life has no purpose.
- feeling generally depressed and hopeless about the present and future.
- expressing despair and a desire to withdraw from all interests.
You can tell when a person with thalassemia has disconnected from his emotions when she either:
- fails to emotionally connect with others.
- expresses inappropriate emotional responses to stimuli (e.g., laughs when others express sadness).
- holds facial expressions that are mostly neutral, cold, or distant looking.
- projects a generally unhappy and sad aura.
- becomes uneasy when displaying any type emotion, be it happy or sad.
- radiates an energy of unexpressed rage that feels unsettling to be around.
So, how do we fix this situation?
For parents who have children with thalassemia:
- do your best to give the child independence both inside and outside of the hospital.
- make statements like, “I know you feel sad. I know.” By confirming his emotions, you will teach him to trust his emotions.
- ask him to express his feelings before, during, or after his medical care.
- assure him that you are going to love him and care for him no matter how he feels.
- gifts don’t hurt, as long as your child knows that you love him regardless of putting on a happy face (i.e., going against his true emotions) while getting stuck with a needle.
- encourage your child to reach for the stars. Never shame or defeat him by telling him that he is limited in his abilities, because he has thalassemia. Teach him that it is safe to strive, because he is loved and worthy of all that is good in this world. If you teach him limits, his life will become defined by those limits.
- get help. Talk to a therapist and work on your own feelings about your child’s illness.
- remember that your child is his own person and not an extension of you. He has the right to invest in his own interests and desires as he grows older. In other words, if you force him to study math when all he wants to do is dance, you are teaching him to distrust his internal drives.
- remove your feelings of guilt about your child’s illness. Guilt will not make either of you happy or powerful. Forgive yourself and become the most encouraging parent you can be.
For adults with thalassemia who have begun to give up hope and are working towards intentional or unintentional (passive) suicide:
- consider the fact that you have been trained against believing in your own emotional guidance system and that is why you have lost trust in yourself and life.
- begin to reconnect with your emotions by expressing them. If you are extremely detached from your emotions, you may have to retrain yourself to feel. Do this by watching a movie and connecting with the emotions of the people displayed on the screen. If they laugh, you laugh; if they cry, you cry; and so on. Also consider the way your facial expressions look as you express emotion. Do you have a smile on your face as you cry? Do your best to let go of the false smile that you have been trained to hold onto when you’re in pain.
- allow yourself to express any emotion that you feel has been stored in your body. Listen to music if that helps you get it out. Anger, sadness, loneliness, despair, happiness, etc.
- if something wonderful happens, try to experience the feeling in your body. If something terrible happens, allow yourself to experience the pain and sadness.
- get angry. You have gone through so much in your life and the people who took care of you may not have allowed you to feel significant, validated, encouraged, certain, or loved unconditionally. Express your anger by screaming at the top of your lungs, punching pillows, singing really loud, exercising, or doing something physical to get that anger and resentment out of your body.
- get help. Talk to a therapist or someone who is non-judgemental and knowledgeable about chronic health issues and post traumatic stress.
- begin to trust yourself. If you have an interest in dance, start dancing to your favorite music; find a dance class; meet dancers on meetup.com. Explore your interests without consulting anyone. Just go for it and trust your inner desire.
- know that you are worthy of all that is good in this life, because you are here on this planet. Your job is to express yourself, explore, have fun, and create.
- read books about emotional intelligence, self-actualization, spirituality, and/or psychology. Explore theories on what makes you think the way you do and learn how to do better for yourself.
- know that you are not alone in this experience. It’s actually incredibly common among thalassemia patients — and that’s why I’m writing about it. Talk with others who are going through the same experience; build a support network.
Life is for living.
In order to express your highest potential, you must begin to trust your inner desires and explore the intentions of your heart.
In order to tend to those heartfelt intentions, you must tune into what makes you feel happy, passionate, and fulfilled. You must begin to understand your emotions.
Allow yourself to move forward with courage and trust that life wants to unfold well for you.
Consider how miraculous it is when tiny cells to come together, with an other-worldly intelligence, to form an embryo, an elephant, or a rose.
Your human mind cannot understand the unseen forces instructing you to take interest in certain desires that only you can excel in.
Would you dare interfere with the cells forming an embryo’s brain?
Then why do you allow yourself to deny your soul’s calling?
Consider these things each time you feel hopeless, alone, afraid, or unworthy.
Do not despair. Please remember that you have the universe on your side.
Just begin to trust.
Here’s to your long, happy, fantastically fulfilled life,
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