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

Memories from Paris

After all the troubles I finally got my visa a day before my flight to Paris was due. For two months I had only been dreaming about attending the World Federation of Hemophilia congress, 2012. Fortunately, I was given an opportunity to do a poster presentation at the congress. My mum also accompanied me for the congress and I was happy that both of us would experience a nice time in Paris.

I didn’t know what things to keep in my luggage due to the excitement of going to Paris for the World congress. Guess what? I forgot to carry my woolens. The moment I landed in Paris, I was shivering due to cold waves. Being an Indian, Paris seemed to be colder for me. Somehow I managed. 

After checking out from the airport I had to find my way to my hotel. It wasn’t difficult as French nationals really helped me at every step. There was a pretty woman was watching me as I was in confused state. She came to me and told me how to get tickets for the metro train. I thanked her and got my tickets. 

Then I asked for metro platform directions from a dad of two beautiful kids. He was so helpful and kind to me. We boarded the same train and chitchat for a minute or two. My mum asked me to take permission from the kids’ dad as she wanted to get herself photographed with those cute and innocent kids. I really liked those kids as they were disciplined and shy. 

Finally we got down at Chattele. From there we had to take another train in order to reach our hotel. At the Chattele station we met an old French man who made sure that we boarded the appropriate train. He sat behind us in the train and informed us to get down at La Defense. I thanked him and moved on to find the way to our hotel.

As we walked towards the exit of the La Defense metro station I asked a young man to guide us towards hotel IBIS. He not only gave us the directions but also lifted our luggage and dropped it at the exit door. I think he was going for work but I was so impressed when he stopped and helped us generously. 

Finally we checked in our hotel. I and my mum got fresh and ate Matthi and Gur pare which we got with us from our country. Then we went to hotel Novotel to find out whether Cheryl D’Ambrosio had checked in there or not. The receptionist was so kind that he showed the list of World congress delegates which were suppose to check in at Novotel. Unfortunately I didn’t find Cheryl’s name in that list. With a sad face I came back to my hotel. My mum got busy with arranging our luggage in the room while I fell asleep. After arranging the luggage my mum also slept as she was also exhausted and tired. We had a wonderful sleep. Suddenly we heard door knocking. The moment I opened the door there was no one. I thought someone would have knocked our door by mistake. Surprisingly I got a call from Cheryl and she told me that she was knocking our door but we didn’t open it. At that moment I got to know that Cheryl was staying in our hotel and I was not even aware of it. I got to know about Cheryl in 2009 when she was thinking of hosting an International creative arts contest for girls and women with bleeding disorders. One of my writings was referred to Cheryl by Laurie Kelley. I was fortunate to be the first contestant of the creative arts contest. After that Cheryl established MyGirlsBlood and I got associated with it. I am glad to be part of MyGirlsBlood as it was Cheryl was motivated me to present my work at the World congress.

Reception area of Hotel IBIS

It was a magical moment when I saw Cheryl. She hugged me and we felt extremely emotional. We had been sending emails, exchanging ideas and planning activities for MyGirlsBlood together for a long time but never met each other in person. I am at loss of words to describe that moment. Then Cheryl met my mum and both of them hugged each other. I made sure that Cheryl felt comfortable and talked for an hour or so. It was Cheryl who invited me and my mum for dinner and took us to see Eiffel tower and other famous monuments with her. We took photos and discussed how women with bleeding disorders can get benefited and empowered. Three of us came back to our hotel and decided to meet at 11:30 AM so that we could go together to attend the congress. 

Visit to Eiffel tower with Cheryl

On the first day I met my old and close friends from the hemophilia community. I was fortunate to meet Shirin from Iran. She came with her husband and it was really nice to meet both of them.



Cheryl introduced me to Patrice and all of us hanged out together at the grocery store on level 0 of the congress venue. Patrice is a charming woman who has charisma in her smile. She is doing a great job for women with bleeding disorders in the United States.



At the opening ceremony I finally met my dearest friend Laurie. It was the second time to meet her in person. Laurie told me that she adored my Labrador puppy ‘Oriana’ so much. She met my mum and was really happy to see us there. It was such a great moment for me to be with the most important ladies of my life – my mum, Laurie and Cheryl. They have always been my strength during tough times. I owe my success, happiness and life to these women.

It was a moment of pride for MyGirlsBlood when Cheryl gave a presentation on Patients and family blogs. She stole my heart away. Her presentation was really impressive and made an impact on the audiences.  

Cheryl giving her presentation

After Cheryl’s presentation we went to a nearby restaurant with our new friend Wendy. I must tell you that Wendy is a real sweetheart and she calls me Miss. Anorexic. She is a great person and a kid at heart. It was nice to hang out with her.

On July 12^th, 2012 I had my poster presentation. Cheryl was with me to help me fix my poster on the board. She was happy to see me come so far and became emotional Cheryl took photos of my poster and me. I felt proud for making Cheryl’s dream come true. She had a vision for me and I was fortunate to make it a reality.

 

As days passed I learned a lot from the hemophilia leaders, researchers and experienced delegates at the congress. I did make new friends and exchanged ideas for making life better for women with bleeding disorders. I met a team of people from Japan and I was really impressed by their poster. I got an email from one of the team members and it is great to share ideas for making our hemophilia community stronger around the globe. 

  Painting by a French painter at the opening ceremony of the World Congress, 2012

I will always cherish all these wonderful and special memories which Paris gifted me. All I want to say is ‘Merci France’. 

These winters

It is obvious that winters will come every year. I do not like winters as I tend to bleed badly during this season. My bleed becomes severe and profuse leading to irritability of mood. 

The same happened in the beginning of this winter season. I suffered from menstrual bleed three times in a month. I felt extremely frustrated and felt very low. After that I had ulcer bleed which contributed in lowering my hemoglobin. Currently I am feeling tired and fatigued.

Now I am again waiting for my menses to hit me hard. I know I will again bleed for a month or so. Winters are extremely troublesome for me. I am keeping my fingers crossed.