A special experience

I never thought I would be loved by kids and adolescents as a Psychologist and Teacher. Three month flew like seconds. I did learn a lot from students and my colleagues. Sometimes I did have conflicts with colleagues but that made  me a tactful individual. This was the first professional experience for me in a not so professional environment. I had to face hostility of students as well as colleagues. It was difficult for them to accept me as part of their family. Students made fun of me, didn't pay attention to my lectures and troubled me to some extent. It was difficult to tackle all these challenges at first but with patience I resolved most of the issues. The special educator always disliked me. She felt less important and always wandered in corridors to meet and greet other nonsensical colleagues. Oh God! Please raise her IQ. The content of the conversation which I had with her was always limited to backbiting and criticizing others. I hated to listen to her silly and childlike opinions. Somehow I managed to get rid of her as I was allotted a separate room to work. It was a great relief...I swear of my academics.

My colleagues started calling me arrogant as I never talked to anyone of them. Most of them always had a stern look and being a junior I felt hesitant to approach them. So..everyone started comparing me with the so called jovial and extrovert special educator. I hated it to death. I wish they had found an intellectually equivalent being to compare with me. Seriously, these colleagues of mine need individualized therapy for rectifying their cognitive distortions. Well...I never considered them important. To be honest they never concerned me. I didn't transmute according to their wish...That's why people who know me well call me a stubborn individual.

Artificiality rules the society but exceptions are always there for bringing revolutions. I am not calling myself a revolutionist. The society needs a sensible makeover in terms of its cognitive abilities.

All right, coming back to my journey...Days passed and I remained myself. I wanted students to accept me the way I was. And I am glad they did accept me. Few female students asked me the reason for being a simple individual. They grew up seeing their teachers and Psychologist being fashion fiestas. Well...I was the odd one out in my students' view. I am glad that they did provide me affection and respect. Respect was not out of fear but authentic gratitude towards me for being an amiable psychologist and teacher to them. I laughed with my students, played badminton with them and even cracked jokes about other teachers.. but it was fun. Everyday students came to me with their issues and life challenges. They viewed and considered me their friend, guide and adviser  Most of them would share their deepest secrets and untold dreams and aspirations to me. It was my students' trust in me that helped me cope with harsh, insensitive and less intellectual colleagues of mine...not all were non/less intellectual.

If my university batch mates were with me at my workplace they would have got astonished for sure...the reasons are many. I never liked kids' company and always criticized people for progeny procreation...hey hold on...I am still against progeny procreation. I had always escaped from pediatric posting during my clinical residencies so I didn't have hand on experience of dealing with issues of kids. Being an asocial person I was able to gel with others...I agree it was minimal.

My treasure is my students' respect, concern and love for me. I will always cherish memories of my students.

There is another aspect of my first professional experience which will always be with me. One of my colleagues (Mr. V) always bestowed his kindness, concern and affection on me. He would come in morning and greet me good morning with a slight smile on his face. It was nice to accept his greet everyday. But I always gave him a stern look..and one day he said "smile please". I don't like smiling or laughing for without any reason...I am usually in a serious mode but when I laugh I can't stop it. On my last day, this colleague of mine stated "this is the first time I have heard the sound of laughter coming from this room. I didn't know that my neighbor (that means I) knew how to laugh". I will always remember his final words. It was a sweet relation which I had established with him. We would discuss issues which were polemical in nature and I was the one who would speak a lot...Mr. V always liked listening to my views...this is what I think so!!! He always tried to be amiable to me. I must say he wasn't like other men...he had something unique and unusual in him. I admire his simplicity and politeness. In his view I admire abnormal people and things. Sometimes his behaviour was erratic and he would give vague looks to me...as if he had got amnesia. Wink wink!!!

Ummm....what else??? I hope I am not forgetting anything else to pen down. The pen fights which my students had was never liked by me. The tool for acquiring knowledge was disrespected by students. Somehow I convinced them not to have pen fight during my lecture hours..and surprisingly they agreed.

Ohh...yeah...I must mention about my Metro hangout gang. There were three members in the gang: Mrs. shiji, Mr. V and of course the asocial homo - sapien that is me. We always had wonderful time while traveling in metro. Three of us would make fun of women who were senselessly and indecently groomed. Mrs. Shiji would comment on funky college goers in her typical Malayalam accented Hindi and Mr. V would smile and nod to express his agreement. Our metro gang didn't only made fun of others but we did have days when serious issues relating to life were also discussed. Three of us had varying perspectives and each one of us was given liberty and opportunity to put forward his/her views. I and Mrs. Shiji did crack jokes about Mr. V which he was unaware of till the last day. My emotional bonding with both these individuals got strengthened the day I started traveling with them. Both these colleagues and friends of mine always showed their concern and care for me. I would feel special when Mrs. Shiji would wait for me at the reception after getting free from work. Mr. V always found seat for me and Mrs. Shiji in metro. I must say, he is a man who has a lot to express but never expresses anything openly due to fear. Due to his fear, he has been subjected to students' pranks and jokes. I never liked students cracking jokes about him. I always told students to put themselves in his position and think about his situation. To some extent they limited their habit of making fun of Mr. V...and I hope they don't trouble Mr. V anymore.

There is a student who has a special place in my heart. She is a pure soul...someone who is knowing and discovering life principles and the World on her own terms and will. This student was subjected to bullying and I am glad that I had an opportunity to help her deal with this life crisis. She trusted me a lot and I tried my best to be there for her. Her face will never fade from my memory. She is an innocent, naive and honest girl who will surely become a successful and strong young woman one day. Her eyes were filled with tears the moment I broke the news of my resignation to her. I could feel and sense her pain of parting from me. Her eyes conveyed her sadness more than anything else. She stood numb for few seconds and then hugged me gently. I felt extremely emotional. I always saw my own image in her. Being a victim of bullying myself I could understand her adversity. She would always come in morning to say hello to me. I was also conditioned to her morning greeting to a great extent. I wish to see her happy, successful and contended in life.

I thank all students and sensible colleagues for making my first professional experience a memorable one.

I must stop boring the person who is reading this. Thanks for bearing me. SayoNara :) :)

On Doctor's Day

A tribute to all sincere, honest and compassionate Doctors!!!!

                                          You are a beautiful light,

                                       Which makes others’ life bright.

                                          You have the power to heal,

                                    And you give people a wonderful feel.

                                    You have a reservoir of compassion,

                                  Which, you exhibit with great perfection.

                                       You feel others’ pain and agony,

                        And make them realize that life is a beautiful journey.

                                  You guide others with firm determination,

                                And they end up finding their real destination.

                            Your pleasant words are like a honey comb,

                                 Sweet to the soul, and healing to the bones.

This unexpected life

It's dark, very dark
and you have so much of suffering
Holding the candle of hope and running through the darkness,
is making you determined, to overcome the obstacles on your way to prosperity and peace

The storms of hopelessness may make you feel lost,
but the king of the universe, is there,
up above the sky and will give you strength and courage

You unquestionably accepted
the destiny of life,
but there lies an ocean of dreams, aspirations and compassion inside your heart

Life is not a calm wave lapping the shore line
and will not always provide rewarding opportunity
Trying to find opportunity in every adversity will bring joy and satisfaction to you

The principle of moving ahead in life and not regretting for the past is the key to achieve acceptance towards self and opens doors of a more blessed life

Your fears are obvious and important, but always try to defeat
and dominate the fear,
The day you will conquer your fear,
you will start loving yourself, your life and you will welcome your adversities

Your life is beautiful and tough at the same time
a rainbow of sorrows, pain, sufferings and joys.
The storm of adversities will bring rain of unhappiness and hopelessness
and the seven colors of the rainbow will bring happiness, comfort and relief.

Family issues faced by women with bleeding disorders and importance of psychological help in overcoming them

Abstract

Family plays an important role in overall development of an individual. The contribution of family in making women with bleeding disorders more empowered and self sufficient cannot be overlooked. These women face numerous family issues right from their childhood till adulthood. Such issues range from parental neglect to sibling rivalry to adjustment problems and others. Persistent unresolved family issues can lead to distorted self image, low confidence, guilt and feelings of inadequacy in women suffering from lifelong and chronic bleeding disorder.  Most of the time, family issues affect woman’s psychological functioning to a large extent. Therefore, seeking help from psychologist/counselor could be of great value. These professionals not only facilitate resolution of family issues faced by women with bleeding disorders but also play an important part in improving and enhancing psychological functioning of afflicted women.

Keywords: Self image, Psychologist, Bleeding disorders, Psychological functioning.

 Introduction

Women with bleeding disorders have to face many challenges in life. Besides managing their bleeds they have to make adjustments and compromises to get fitted in the normal individuals’ society. We know that family is important and the same holds true for women with bleeding disorders also. There are families which have a narrow thinking about the diagnosis of the afflicted woman. On the other hand, there are also some families which help the woman in discovering her potentials to the fullest. The attitude and perception of the family helps in making a woman with bleeding disorder an empowered and successful individual of the society, nation and the world.

Every family faces challenges in their own and specific ways. But complications may arise for women with bleeding disorders in a family set up. The issues for such women are quite different from normal women. It is not only about sharing, giving and caring for other family members but to survive and make others acknowledge about their bleeding disorder.

1.     

Denying the diagnosis

The first issue that can be witnessed is denying the diagnosis of woman with bleeding disorder. This is mostly seen in families of newly diagnosed patients. However, there are families that fail to accept the condition of the woman despite of knowing about it for many years even after getting a diagnosis. Reacting to their denial, the woman will be forming a perception about her disorder. Constant denial might develop guilt in the afflicted woman.

2.     Sibling jealousy

It is generally seen that families, especially parents, tend to give more attention, care and concern to the suffering member/child. The root cause of sibling jealousy takes birth from the extra care, affection, attention and concern provided to the afflicted one. Normal siblings develop interpersonal problems with the diseased sibling and tend to resent her. Normal siblings in the family may feel neglected and distanced from their parents because they believe their diseased sibling has more love from the parents. They may exclude their suffering sibling in games, play activities and other sources of enjoyment. In adulthood, the issue of sibling jealousy takes a different form. It might remain latent and come into limelight even after many years. So the woman who has a chronic bleeding condition has to face this additional challenge of getting and gelling well with her own siblings.

3.     Indifferent attitude of one of the parents

Mothers may tend to give more importance to their daughter’s needs having a bleeding disorder than to the needs of the rest of the family members. This may sometimes result in fathers thinking that they are being neglected and not given importance by their partner. Fathers may then behave in a hostile manner with the afflicted one. This hostility might not be evidently visible but might be projected in behavior of the father. The woman may feel guilty of creating distances between her parents. If guilt develops in woman with bleeding disorder then it needs to be addressed appropriately and resolved immediately. This can be done by consulting a professional who has expertise in dealing with relationship issues. Guilt also serves as a basis for development of fragile ego strength and poor self perception in women suffering from various bleeding conditions.

Every individual has various potentials of achieving success at academic, professional and personal front. The same principle is applicable for women with bleeding disorders. Sometimes parents may feel that their daughter cannot do a particular thing and they dis-empower their child from pursuing ultimate life’s goal. This in turn can create diminished self image and less confidence in one’s potentials and abilities. The aim is to make ailing women empowered and independent, rather than telling them what they can do and what they cannot do in their life. The focus of parenting must be on the strengths of the individual suffering from chronic bleeding condition. Motivation works as a facilitator in achieving one’s dreams and goals in life. If significant figures of the sufferer doubt her capabilities then it can lead to feelings of self insufficiency and self doubt.

4.     Financial problems

Economic status of a family also matters a lot when there is a woman with bleeding disorder in the family. The expenses spent on treatment of such woman might be an important issue for the family as well as for the patient too. At times, families with low economic status fail to provide quality treatment to the afflicted woman. This in turn, creates other medical complications for women with bleeding disorders. Some women cannot even afford to buy medicines like hormonal pills to treat their bleeds. On the other hand, factor infusions remain a dream for women with moderate/severe form of bleeding disorders having a low economic status. Here the patient might blame oneself for the stressful environment of the family.

5.     Issues related to marriage

Marriage is a challenging issue for women with bleeding disorders. Families tend to pressure the suffering woman to get married, even when they know about her bleeding disorder. In an Indian family setting, having a daughter with bleeding disorder is considered to be taboo. Sometimes parents might not reveal the disorder of their daughter when marrying her off in another family. This creates problems in future not only for the woman but for the parents and other family members too. Making adjustments in family needs support from other family members as well. For a woman with bleeding disorder starting a new family life after marriage might be extremely challenging especially when she has become a part of a family which had no information about and exposure to bleeding disorder. Various family members may have differing expectations from the woman but living up to their expectations is a tough and challenging thing. She might face problems of making her new family members understand that her disease is real and it really creates problems and pain for her.

6.     Issues surrounding childbirth

Child birth is an important decision in one’s life. This becomes a complicated for women with bleeding disorders. These complications account for heavy blood loss during delivery and post delivery recovery of the woman. The partner might want a baby but the woman feels that it could be very challenging for her. This could lead to disagreement and misunderstanding between them. Moreover, it may leave the woman to compromise in order to sustain the relationship with her partner.

7.     Problems of extended family

If the suffering woman lives in an extended family then complications are doubled. There might be family members who may ignore her bleeding problem and think that having an unseen disorder cannot affect the functioning of an individual. Such a situation arises out of less awareness about bleeding disorders of women. Few people may acknowledge that women can also suffer from bleeding disorders but unfortunately majority of individuals think that it is only the disease of men. In such a scenario the woman has to face non - acceptance of her family members. The woman might feel rejected and unaccepted by the family. 

8.     Problems of mother child relationship

Another important issue is the mother - child relationship. Sometimes women who have moderate/severe form of bleeding disorder might not be able to take care of their babies/kids, which may lead to distances between both of them. Such women must be encouraged that they have potential of taking care of their babies/kids despite of their disorder. Motherhood is a special period in one’s life and women with bleeding disorders can also live every moment of it.

Discussion and conclusion

As highlighted above, there are numerous family issues a woman with bleeding disorder faces from childhood till adulthood. The complications might result in failed relationships with other family members and might leave the woman with a sense of loneliness and failure. Psychological interventions at the primary level might play an important and crucial role in helping both the patient and family members to work effectively on these issues. The step in preventing or minimizing such family issues is to help family members attain a thorough knowledge about the woman’s disorder and how it affects various aspects of her life. A counselor or psychologist then could plan a session with the whole family so that underlying fears and apprehensions could be addressed directly. If the psychologist thinks that specific family members are not gelling well with the afflicted one then focus could be directed towards them. Family dynamics and functioning of the family affects the suffering woman to a great extent. If problems are arising out in context of other members then they must be tackled effectively with the help of professionals who can help both the woman and family members. The role of a psychologist cannot be underestimated as his/her skills could help the woman and the family to come close and work in a symbiotic association with each other while acknowledging the bleeding disorder of the afflicted. Issues associated with low self esteem, confidence and distorted self image can also be addressed by working in close collaboration with the psychologist/counselor.

In a nut shell, family issues will always be faced by women with bleeding disorders. Unresolved family issues can prevent such women from living a satisfying life. Thus, psychological help could be positively influential in making family environment, dynamics and relationships more fruitful for women with bleeding disorders. 

Awareness will lead to Actions

I did not know that I was born with Von Willebrand’s disease (vWD) until I was seventeen. Since my menarche I knew that the way I bled was different from other females. I ignored this fact, but it was in my subconscious mind. The news of my disease came to me as a shock even though I had been waiting for an answer.

Five years back, I went to one of the reputed hospitals in my country for a Gastroenterology consultation. The doctor examined me and suspected pathology related to the pelvis. He advised me to consult a Gynaecologist for further investigations. When I went to the gynaecologist, I experienced a different scenario. After examining me for pelvis pathology the gynaecologist came to a conclusion. There was inflammation in my pelvis, but it was not serious. Suddenly the doctor asked me about the menstrual cycle and profuse bleeding. I told her that my menses continued for more than fifteen days. The gynaecologist advised me to get some initial blood tests done as early as possible. My family history was taken into account. Ultimately I was referred to a Hematologist. It was now quite clear to me that a bleeding disorder runs in my family.

After blood screening tests I was diagnosed with vWD. My hematologist provided me with treatment. Initially I was given oral contraceptives, which did nothing for me. Rather they made my bleeding worse. After the oral contraceptives did not work, I was given tranexamic acid tablets. The doctor thought that this would control my profuse and severe bleeding. To my surprise it did not work for me either. After few months I decided to discuss the matter with my hematologist.

I thought that it would be harsh to stop the treatment on my own without consulting my doctor. I believed my hematologist would feel insulted or ignored if I stopped the treatment. I did not have a medical background with specialization in clinical hematology, so I kept taking the medicines. However, I was able to make the doctor understand that tranexamic acid was actually ineffective for me. My hematologist not only considered my request, but also provided me information about other treatment options.

At that time I learned about Desmopressin nasal spray. I wanted to try it, but I could not find the spray anywhere. Then I made an application to MSD (this department is responsible for importing life saving medicines for patients from abroad and various regions of India). A fax was sent to a pharmacist in Middlesex (UK). The pharmacist sent the desmopressin nasal spray in a lesser strength used for diabetes mellitus. All my expectations were shattered when I discovered that the spray I received was of no use to me. I had a sense of hopelessness.

The last treatment option was factor injections. My hematologist was not in favour of starting factor infusions. The reason behind my doctor’s “NO” to factor infusion was the fear of acquiring diseases like Creutzfeldt Jacob disease, HIV and Hepatitis. I feel that it is just a matter of chance that I may get one of these diseases.  I convinced him to change his decision and start the factor therapy. Now whenever there is a bleeding episode I have factor infusions.

I must tell you that my doctor did not make me aware of my disease. I tried my best to learn about every aspect of my disease so that the decisions regarding my treatment strategies are appropriate for me. My mother encouraged me a lot in learning about vWD. She gave me a book entitled “Clinical Hematology in Medical Practice” by G.C. de Gruchy. It has helped me to widen my knowledge about bleeding disorders.

One thing which is extremely important to me is to know about all aspects of the disease. If a patient is well equipped with knowledge, then it becomes easier for the patient to be active in decision making.

The key to awareness is knowledge about the disease. Bleeding disorders in women are unusual. Even medical and nursing professionals may not be aware that bleeding disorders can also affect women in a drastic way. The symptoms of bleeding disorders in females are manifested in a different way than men. The process of getting a diagnosis of a bleeding disorder becomes complicated by various influencing factors. Moreover, the treatment provided may be ineffective if the disease is not diagnosed appropriately.

Special clinics may be established, which give attention to the symptoms of women suspected of bleeding disorders. A counselling committee at every hospital could provide authentic and appropriate information to newly diagnosed women about their specific bleeding disorders. Informative leaflets could also be useful in creating awareness of the general public. Discussion groups could provide a platform for women to interact and communicate about their current condition with others with bleeding disorders. Workshops, seminars and conferences including research and scientific advancements would be helpful.

The goal is to address the unheard voice of each and every female with bleeding disorders around the globe and bring them relief, comfort and happiness. This will help to make the future of women with bleeding disorders bright and secure. 

A drama on Von Willebrand's Disease

"Gyne" is a nice Japanese drama which has mention of a case of Von Willebrand's Disease...A female patient who dies due to hemorrhaging during and after child birth is undiagnosed Von Willebrand's Disease affected individual...One day her daughter cuts her forearm and she keeps bleeding even after getting stitches...that's when the Emergency doctor sends her to a Hematologist...The Hematologist runs a Factor Assay Test to find out the possibility of Von Willebrand's...The Hematologist tells one of the Gynecology doctors about the actual cause of pre and post child birth hemorrhaging of the female who died...It happened due to Von Willebrand's Disease...The Hematologist also finds out that the new born baby and the elder daughter of the female who died due to severe bleed also suffer from Von Willebrand's.

The message is to get a diagnosis of a bleeding disorder even if there is slightest of the possibility.

This drama will always be special for me...Cheers to Director of Gyne...Thank you for spreading awareness about Von Willebrand's Disease Mr. Director!!!

Here is the link of the drama -http://www.gooddrama.net/japanese-drama/gyne

Oriana's Birthday is coming!!!!

Oriana is my lovely and beautiful daughter. She was born on April 26th, 2012. Her Australian Labrador Retriever mum delivered 6 female babies. I am fortunate to have Oriana in my life. She is a cheerful living doll....A baby with lots of tricks to amuse me!!!

I will be celebrating her 1st birthday this year and the invitation cards have been sent to my friends and those who love dogs.

The big day is only 16 days away....Oriana will be the Star of the evening on April 26th :)

Love you Oriana. Thank you for making my life so special and beautiful.

ORIANA