Psychological Issues of Thalassemia

When my son was first diagnosed I felt that the most difficult part of dealing with thalassemia would be the physical issues.  

Over time I have realized that the physical issues are not always of greatest concern.  Psychological and social issues are much more likely to take a toll on patients and families.  The most difficult physical issue for us has been his antibody issue, but other than that I feel that non physical issues have been more difficult to deal with.

Issues mentioned at the conference, that thals deal with were - insurance, missing time from work or school to attend medical appointments, having your hospital cooperate with the comprehensive care facilities, falling behind in place of work or at school due to missed time etc.

When lil A was young - we always went to the same hospital, every 4 to 5 weeks.  In his early school years this did not affect his education, he continued to be at the top of his class despite missed time.  At times we felt that thalassemia was not a big part of our lives at all.

Over time, as he developed the antibody and his transfusion frequency increased - and the need for 3 weekly ivig infusions arose - the hospital was less likely to cooperate with our needs.  He has been missing a lot of school.  The teachers often carelessly penalize him for missed time.  I have had to struggle with the school to not do this.  The hospitals are facing cutbacks and not knowing where to put the thalassemia patients - so we are trying to find a place between two hospitals where we can get care.  Admin staff at the hospital has little patience to accommodate us, let alone create an ideal situation where kids can occasionally be treated such that they don't miss activities that they have spent months looking forward to.  As parents we keep quiet, because we never know when an emergency will arise and we may need to ask for a favor then.

Extended family and friends - can be extremely understanding and supportive.  Others can be annoyed when we miss functions and activities due to treatments.  Some of them are tired of hearing our excuses - because they have been hearing these excuses for years.  

Some of these issues can be extremely exhausting and discouraging.  I am working through all of this now, and I encourage others to share as well.  Eventually, I will write about the positive and ways to overcome this - but right now I am going through a big, dark cloud  

Sharmin

Come on Sharmin,

what would you say if you were in my shoes? Facing that for so many years... When I worked in a bank and left when bank closed for my transfusion, there were colleagues who resented my leaving before them---remember, I was leaving my work at the end of the working hours to be transfused. I never left early although I could ask for that--at the same time there were a lot of other colleagues who left early for the most ridicule matters.I never did that and remember that I was stressed and urged myself to run faster in order not to get any complaints from the hospital stuff. I was in another Thalassemia Unit back then from the one I am now. All I want to say is that we must not let these things stress us. People are ready to criticise at one instant or another, but what would they say if they were in our position? I have learnt not to consider any of these as grave matters-regardless of how much they intervene with my life and programme.Otherwise we will find ourselves in the position to get upset for foolish things-and this is what we do not need.

Lena.

Thanks Lena,

During the symposium we had a session to discuss these very issues.  Most days we don't let ourselves get discouraged by these issues, but on an off day they can get to me. 

What I am learning is that this disease is a matter of survival of the mentally fittest - especially in "developed" countries.  Those patients, like yourself, who is able to overcome the psychosocial issues that this disease presents, do very well but those who cannot overcome them succumb to the disease.  The doctors at the conference repeatedly told us that the treatment and drugs are available but some people are not using them.  Some people are giving up on themselves, and even now - in well developed countries, many thalassemia patients are still dying due to non compliance. 

My goal has been to not to raise my son not to feel sorry for himself, rather for him to be grateful for the life that he has and all that he can do.  He is being raised as normally as possible, with similar expectations as my daughter.  I also know that until he grows up, at times I will have to be an advocate for him - so that teachers do not scold him repeatedly in front of the class because he is missing school so much.  (He has to miss more school than other thals because he is treated for thalassemia and his hemolytic anemia). 

My reasons for discussing this are perhaps to address how we can help thals and their families overcome some of these issues in order to improve their quality of life, their self esteem and their self worth.  Indirectly, I think that these issues do kill thalassemia patients. 

We can make some changes in society, but most of the changes have to be in the minds of the patients and their families.  On the first day of the conference, compliance with chelation was described as the worst problem patients faced.  It was unbelievable how many thals did not take their meds - even oral meds!  Unfortunately, the introduction of oral chelators did not increase compliance in thals - which is both surprising and disappointing. 

Many of the American patients described insurance as one of their greatest obstacles once they became adults.  It interfered with their ability to work and feel like contributing members of society.  Obtaining adult care was also very difficult - and a sense of not being welcome in health care settings was prevalent.  Here again, individual personalities determine who will prevail and who will succumb to these pressures.  My hope is that all care centers and groups such as ours can build strength in people mentally and emotionally. 

A great place to begin is by listening to people like yourself Lena, as you are someone who has definitely prevailed.  Your iron will has helped you get where you are (I think that iron is a bad word for thals...lol).  An attitude such as yours is what we should be spreading to all thals and their families.  It also makes me think about why across the board - female thals do better than male thals - survival is also significantly better among females. 

I cannot even imagine what you go through, and how you have gone through it for 48 years.  I can't imagine that I would be able to handle life as you have with such courage and such grace.  As a parent, just like any other parent - I would take the disorder from my son in a moment - I would take it all in his place - but I have to accept that this is his disorder.  I can be his source of support and guidance, and when appropriate I can be an advocate for him.  Mostly however, I have let him deal with it and hope that he will be one to prevail. 

Sharmin

Sharmin-Lena,

This is so true. It sure is a mental game for those who have the means to fight it. There are so many thals who are shown a glim picture of thalassemia. Even in today's world where thals are reaching in their 50s and breaking all what was un-thinkable, some doctors in some part of the world (Folks - This statement is NOT TRUE, but this is what some ignorant doctor say) - "Thals will only live until their teens". Those ignorant doctors don't know what they are doing by passing on a heart wrenching ignorant message to the parent of a just diagonised child.The psychological issue comes up big here. Parents (most of them) would breakdown. Most of them not knowing what it means cry and don't see a light in their childs life.

Reality
Now, let's come to what the reality of thals is in today's world. I see they can do every single thing a non thal can do. They go to school (become high ranking doctors), play sports(some play better than non thals - read Little A), marry, have kids. But, as Sharmin mentioned and as the opening day of the symposium highlighted - Compliance is the key. If a thal complies to what needs to be done, nothing can stop him/her.

It is all on will and here is a something, I ran into which shows what "inner strength and will" can do 

Here is a summary of living illustration of a spirited attitude of 'can do':-
One day, a son asks his dad "Daddy, would you like to run a marathon with me?"
The father says "yes".
And they run their first marathon together.

Another time, the son asks his dad again, "Daddy, would you like to run a marathon with me?".
The father says "yes son".

Then One day, the son asks his father "Daddy, would you run the Ironman with me?
The Ironman is the most difficult Triathlon ever... which includes
4 kms swimming, 180 kms biking and 42 km running.
And the dad says "yes".

The story looks simple until you watch the following clip - http://www.youtube.com/watch?v=VJMbk9dtpdY

It's a saga of a father's Love for the child.

To find out more info on the Hoyts go to http://www.teamhoyt.com/about/index.html

FYI - Rick was born in 1962 to Dick and Judy Hoyt. As a result of oxygen deprivation to Rick's brain at the time of his birth, Rick was diagnosed as a spastic quadriplegic with cerebral palsy. Dick and Judy were advised to institutionalize Rick because there was no chance of him recovering, and little hope for Rick to live a "normal" life. This was just the beginning of Dick and Judy's quest for Rick's inclusion in community, sports, education and one day, the workplace.

Dick and Judy soon realized that though Rick couldn't walk or speak; he was quite astute and his eyes would follow them around the room. They fought to integrate Rick into the public school system, pushing administrators to see beyond Rick's physical limitations. Dick and Judy would take Rick sledding and swimming, and even taught him the alphabet and basic words, like any other child. After providing concrete evidence of Rick's intellect and ability to learn like everyone else, Dick and Judy needed to find a way to help Rick communicate for himself.

Truly inspirational. As you both said - It is all in the minds, but i do also agree - It is a battle which we all can fight with the help of each other.

Narendra,

Thanks for sharing this.i wouldn't say it brought tears to my eyes,it made me cry,i hope that one day i'll be able to overcome my weaknesses and be a great parent like Dick Hoyt.And i hope it won't be too late.

Zaini.

 The main thing is not to let thal prevail. How are we going to do that? By not entirely occupying ourselves with thal. Only as much as it is necessary. We need to remember that we are normal people, keeping busy with normal things, doing normal jobs and above all not keeping ourselves in a ghetto. And as much as I highly appreciate the positive things we all get from this site, I tend to think it becomes a bit of a ghetto in case we all rotate around it.

Lena.

I'll add to the above what Andy said and I loved it : let's keep busy with life!

These days I am very happy as I am going to translate into Greek Naguib Mahfouz, the only Arab writer who won the Nobel Prize for Literature. My publisher told me to read and select between two of his books. So... let's keep busy with life!

Lena.

Don't get me wrong, but could you understand it's very difficult to plan your life into two weeks. Every two weeks we do repeat the same demo over, and over again. As for me; how older I get how more my hgb drops. I think that's were most of us thinks about. I do think I may say that it also depends on the time between transfusions. In my pkd world I am the only one who get 1 every two weeks. Above all pkd is rare, there is no active research, but I think it's the interval were most of us have difficulties to deal with.

Dore,

You are right, these diseases affect everyone differently.  One of the main issues is the complications that can occur.  Increased transfusion frequency can be an impediment, especially for students and those having a career.  Of course we must find a way to move ahead.  It is nice to be here and to find support and ways to cope.  Your approach to life and your dedication to your studies shows incredible spirit and determination.

Sharmin

Dore,

I fully understand your point of view and I agree with Sharmin that the disease affects everyone differently and each one of us finds his/her own way to handle it. That's true. Another thing that is true, is that complications play a great role in organising one's life. The more the complications, the greater the difficulty to arrange things. But life with thal is not easy for anyone, complications or no complications. And complications may occur at any time during our thal life. It's our personal touch that makes the picture look bright or dim and how deeply we have accepted thal in our lives and find our balance through it (although that picture might tremble from time to time).
My concern during all these years with thal--if we are to talk about psychological approach-is not to tend to separate myself from the flock, not to (deliberately or not) put myself in a ghetto,  not to paint my life with thal colours.
That is my wish for myself and I'll admit there are times when I find myself  losing my step. It is then that  I draw myself back.

Lena.

hmmmm C'est difficile I will answer later. Must concentrate on my exams. My cat has spend 40min on my laptop and not wanting to leave it all that time  She lays now an a sweater in an empty cupboard and I did turn Russian classical music on to keep her calm, but also happy with the unexpected moves of the music.
(I always say that people with a chronical illness must keep the humour alive in their days. it was funny although i couldnt do a thing. so i thought let share it with you all)

No bad meaning at all, but I believe Lena is the expert in making the best of your life or living it the fullest.

I try to keep this quote in mind "whether the horse was guiding the jockey or the jockey was riding the horse" . It must be the latter.

I think a very important part of this discussion is how people define themselves. I know we use the shortcut term "thal" and for me it really is just a matter of convenience to use the term, but are you thal or are you a person who has thal? There is a major distinction here, and how you think about yourself will have a great impact on your ability to do what you really want to in life. Are you managing your condition or is it managing you? Deal with it but don't be it. Lena has had great success by being able to make this distinction in her life. Yes, she has thal, but it is not her life. It is something that has to be dealt with but it does not direct her life. I admire her greatly and not just because she does such a great job managing thalassemia. I admire that she does not let it interfere with having a real life. And I think this is a great example to all and that parents should realize this when they raise their kids who have thal. Yes, take care of the thal and manage it in a serious manner, but please do not allow thal to define the lives of your children. Treat them the same as any child and prepare them for a real life.

My concern during all these years with thal--if we are to talk about psychological approach-is not to tend to separate myself from the flock, not to (deliberately or not) put myself in a ghetto,  not to paint my life with thal colours.
That is my wish for myself and I'll admit there are times when I find myself  losing my step. It is then that  I draw myself back.

This is the attitude I hope to install in my child.  You are so right Lena, as a parent I have to be a role model for my child - and if I break down whenever things are difficult I will teach my son to do the same.  If I want him to 'weather the storm' and come out of it with a positive outlook - then I must do the same.  Everyone has challenges in their life, I have seen some people fall apart over a lot less - all the while I know that - although it is a big deal - a better outlook would have helped them deal with it better.  I need to do the same.  

Two people can be facing the exact same issue, one will come through successful, smiling and inspiring those around them - while a second may spend their time agonizing and feeling self pity - I think at some point we all make the choice as to which route we are going to take.  I think that we teach our children this very early, by showing them how to deal with disappointment.  How one deals with disappointment is the greatest portrait of their character and the greatest determinant of how well a thal is going to do in life.   We are all going to fall of of our path occassionally, what matters is that we get back on  

My son doesn't know many other thals, and other than occassionally at the hospital he hasn't had time to socialize wtih other thals. He spends most of his time with nonthals and his expectations of himself are even higher then his nonthal friends.  I admire this in him.  He received his treatment with another thal on Friday (this is very rare) - but the two spent their time playing - waiting for one another to get their IVs and caring very little about their thal.  It was neat to see his interaction with another thal and how matter of fact they both were about it.  

Thanks for your words Lena, for families such as ours who have not had as much experience as you have - your advice is invaluable.  

Sharmin

   He received his treatment with another thal on Friday (this is very rare) - but the two spent their time playing - waiting for one another to get their IVs and caring very little about their thal.  It was neat to see his interaction with another thal and how matter of fact they both were about it. 


Sharmin

That's the secret Sharmin, this is real success! Being transfused together with another thal and create  an environment totally irrelevant to everything that might remind you of thal. Leave thal on the side even then. That's the way to handle thal. Congratulations to Lil A.

Thanks are in order for you and Andy( speedy recovery for you, Andy!)---you really make me blush.



Lena.

i want's to write  under this topic , but m failed to gather enough courage to write under this , m ... m just tired of facing issues n recalling the times i faced issus is like renewing the wounds ... so ,  not this time , but i hope someday i will  bcome a lil  courageous to re-call that all and write  .....  sigh, life isn't soo easy to live ( i think it descrime wat i want to convey ) or mayb not as easy as we want to ...

Umair