Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Andy Battaglia on April 28, 2007, 06:53:30 PM
-
Depression is very common among thalassemics. A study I saw recently found that 80% of thal majors studied had had psychiatric disorders at least once.
From http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9241900&dopt=Abstract
Self-image was found to be significantly lower in patients with TM than in control cases ...Hopelessness and Trait-Anxiety scores were determined to be significantly higher in patients with TM than in control cases ...Eighty percent of the patients with TM have had at least one psychiatric disorder. As a result, the study showed that most of the patients with TM had severe psychosocial problems. Relying on these data, it was concluded that medical therapy of these patients should be supported with psychological aid and psychiatric treatment.
Over the past 4 years, I have communicated with literally hundreds of patients, parents and family, and friends of thalassemics, throughout the world. I have counseled many dozens of people online, on the phone, and in person, and have had many people confide in me about the emotional problems that that are involved with thal. Anxiety, hopelessness and depression are very common in thals and also, these are often found in the people around them- their families and friends. From the anxiety and hopelessness felt by many parents at the realization that their child is thal and the fear that often confronts the parent as the child grows, to the utter despair of the mother who has lost her only child, to the broken heart of the big brother who has lost his little sister and best friend, to the woman who experienced the devastating loss of her sister, leaving her questioning so much about life, there is an atmosphere of depression that accompanies thal. But for the thal patients themselves, it is a life of knowing there is a constant battle to be fought and ever new challenges just to stay alive. A friend recently told me that a thal never knows what it is to live life without thal for even a single day. When you think about this you begin to understand the emotional and psychological difficulties involved with having thal. Combined with the physical effects caused by iron overload to the endocrine system and the hormones produced, and the resulting effects that may also lead to anxiety and depression, the psychological problems can become significant. Regular counseling may be necessary for many thals if they are to deal with the constant obstacles they have in life, and as this study stated, this therapy should become a regular part of treatment for thalassemia.
It is important to note that the people around the thal patient can also suffer from psychological and emotional problems, as these can also affect the patient. And I have one thing to say to those around the thal. Deal with it. It is so hard to accept that your child is a thal and for friends, it is so hard to accept that you may someday lose that friend. It is so hard to accept that thal involves a lifelong treatment regimen. It is so hard to accept so much about thal. But you have no choice. It's reality and if you are to be of real help and support you are going to have to deal with it and accept that this is how your life will be from now on. How you deal with thal will have a tremendous effect on how your child deals with it. Treatment should be dealt with in a matter of fact way and the child should never be made to feel that he or she is different, weak, or incapable and especially never make a child feel that there is no hope. A thal child should be raised to believe that they can do anything they want in life and encouraged to follow their interests just like any other child. The difference parents can make is incredible. The difference that friends who accept you and treat you just like anyone else makes, is huge. Have empathy but do not pity. The people around a thal can make such a big difference and should never be underestimated. I have talked to countless thals who have told me that their own families tell them they can never have a real life and there is no point in pursuing education or training, that they can never have a career and the most heart-wrenching, that they can never have a marriage or children. I don't think things have to be sugar-coated for thals, but they should be allowed to have a normal life. They are perfectly capable of doing so, and should not be held back by over-protectiveness or ignorance. When I talk to young thals the single biggest emotional problem they face is anxiety. But it is NOT anxiety about their health and their physical future. The anxiety is about the prospects of never having a normal life and especially the thought of never having a mate in life. I have heard this from thals all around the world, even here in the US. This is very sad and also very wrong. Do not deprive your children of a real life because of thal. Do not believe that they have no future and NEVER tell them that they have no hope for a normal life.
The difference parents can make is so well demonstrated in our own Miaki. She has previously posted about what her mom did when she complained about being thal at
http://www.thalassemiapatientsandfriends.com/index.php?topic=179.msg1405#msg1405
When I was younger I use to blame my parents for bringing me into the world of thalassaemia. I thought they hated me & they wanted me to suffer. At the age of 16 when I was at my peak of rebellion against my parents & the world in that matter and I thought I knew it all, my mother took me to a school were she volunteered her time as a carer for children with special needs. Upon arriving at this school (I still thought my mother was nasty, but she was about to teach me the best lesson in life) she says to me “ I am about to take you into this school, when we leave later in the afternoon I will ask you one simple question. I will not be with you once we walk in here your on your own to do as you please”
I walked in & I was left speechless, I felt like a complete idiot that I carried on about my life. I saw children / adults in wheelchairs, in beds, some where missing limbs, others were blind, others couldn’t walk, talk, needed aid in feeding & the list goes on. And here was me who was able to play ball with my friends, go shopping, get an education, & go out with my friends to the movies, for coffee. I didn’t need help in dressing, feeding & so on.
When my day visit finished & I got into the car with my mom for the ride home, not a word was spoken. My mother says to me “is there anything wrong with you?” After a long pause & tears rolling down my face I responded with a simple “NO”
My mother that day taught me the best lesson ever, go out there do what you want to do, become who you want to become, nobody has the right to stop you or take nothing from you. You have a disorder you need to take the right motions in life to keep everything in order so you too can see the world that is at your feet.
That changed me & that is what has made me who I am today. I thanked my mother for that special lesson. I was able to move forward & forget about the kids who use to tease me at school for being short, missing out on school often because I was constantly not well & the list goes on. We have to learn to ignore them because these people are not worthy of your company, your friendship, your trust of YOU!
I have known Miaki for several years and have met her in person at the Dubai conference. She is a confident, outgoing, dynamic individual who should be an inspiration to any parent. If you treat thal as a condition and not as the definition of who your child is, it will greatly minimize the emotional and psychological problems facing thals. I am not saying that a parent's approach will magically make all these problems vanish, but it can have a great and positive effect on the child. Deal with the thal and give your child a real chance in life.
This topic is very involved and even a bit controversial as not all will want to accept the existence of these disorders among thals, but I have talked to far too many thals with similar problems with depression, to believe it is some coincidence. Anemia alone can lead to depression and this may explain why so many minors also get depressed. I know how down I felt about my lack of energy when I had a hematocrit of 25 and my condition was only temporary. The body needs oxygen to thrive and without adequate oxygen, it may be impossible to ever feel "normal". This is why it is so important for all thals to do everything they can to maximize the efficiency of their oxygen carrying blood. Diet, nutrition and exercise are all keys and should never be overlooked. Do your best to make your body its best.
Parents, be strong. Friends, be there. Thals, believe in yourselves.
-
Hi Andy.
Well written. :clap
Thank-you.
Still, I would argue that there is a lot to be desire about our health professionals and our communities that is still ingnorant in the matter of how to treat and deal with thal patients.
The denials and lies has to stop and we all need to be promoting the awareness of thal, in every little way we can and at every possible opportunity we have because like everything else,without educations of this topic changes would surely be slow in comming.
Some people get mental ,because they are misundestood plus the disorder doesnt make it easy.
That 's my two cents worth(LOL)
Kathy
-
Kathy,
I couldn't agree with you more and if you read the post I did shortly before the depression post at
http://www.thalassemiapatientsandfriends.com/index.php?topic=902.msg7236#msg7236
you will see my sentiments about this.
I don't think most doctors, including thal-familiar hematologists have much of a clue when it comes to treating thal minor. It just hasn't been studied or given it's due. I really don't understand why either. If you have a significant mutation or deletion of one of your two hemoglobin genes, it just follows that you won't have anywhere near the amount of good hemoglobin required to provide oxygen throughout your body. This does seem to lead to a variety of health problems in affected minors, but for the most part, this has been ignored by the medical profession. This needs to change and my feeling is that it will take many minors speaking up about their health problems before anyone takes notice.
Minors, please do speak up and let your doctors know that having thal minor does indeed cause many health problems.
Patients, it's up to you to change the world. Only when thal minors speak up and let doctors know that life as a minor is not a piece of cake, will anything change. We do our part here but you also need to do your part in bringing things to the attention of your doctors and when it is needed, bring them evidence from other minors to show the doctors that it is not just you who has these problems. Speak up.
-
Hi Andy,
your post helped a lot as usual.
I am a thal minor and what i am experiencing now a days is shortness of breath,very fast heart beat,i feel like my whole body is shaking and shivering from inside,body pain,drowsiness,not feeling like doing anything,just lie down and breath,,talking is even an effort,blurred visionmissing periods,and top of all depression, i don't know it's due to the hot weather here or something else,and the symptomps have worsened i believe since i have started using a drug called DIANE 35 for regulation of periods.and when i complain i am told that it's all in my head :mad and i should stop visiting this site and thal minor is nothing.i DO NOT AGREE :( .
ZAINI.
-
Hi Zaini,
Any doctor that prefers that the patients remain ignorant about their own health is a fool. Telling you that it is all in your head is ridiculous and should set you on a search for another doctor. I am sorry your doctor believes health is only the province of an "elite" medical club, but in today's world, information is at our fingertips and there is NO reason patients should not inform themselves. It's time for doctors to stop relying on outdated information about thal minor and time to start talking to the patients suffering from its effects!
The side effects of Diane 35 can be seen at http://www.chemist.co.nz/pm/Diane35ED.cfm
Adverse Effects
Serious undesirable effects of Diane-35 have been referred to in the contraindications and warnings and precautions sections.
The following undesirable effects have been reported in users of Diane-35 and the association has been neither confirmed nor refuted:
Breast tenderness, pain, secretion; headache; migraine; changes in libido; depressive moods; contact lens intolerance; nausea; vomiting; changes in vaginal secretion; various skin disorders; fluid retention; change in body weight; hypersensitivity reaction.
-
Hello Zaini,
It is sad to hear of your struggles,but i know it too well For yrs i was on the merry-go -round or call it musical chairs of doctors dance.
Yes it is the doctors that is messing with your mind because they are not taking your complaints seriously.
The heat would be one of the reason your are feeling uncomfortable, because it can make your Blood pressure rise and in return your circulations becomes sluggish and it causes the swelling and then as a result it causes lots of pain.It also could be the new medication contra-indicate with other med you are already taking.
Please change to another doctor that is if you can.It is very rude for the doctor to disrespect you by questoining your ability to know your own body and your pain.
Visiting this site has been an eye opening for me and I beleive it has added quality to my life,the fact that I learnt about this disorder its like getting an education and has allow me to make choices that i would have otherwise not done.Knowledge is power do not let any fools take it away from you.
I believe you and Keep trying untill you are satisfy good luck."where theres a will there is a way."
Love Kathy :hugfriend
-
Hi Andy
OMG! Just the topic I needed to read about! Extremely well written Andy. Spot On! Miaki, read your story before and it really touched my heart. You are all so right. We should not treat ourselves as sick people. I'm glad I had my parents who brought me up the way they did.
My parents didn't think that I would live past 12 years not to mention the age I am now... :mouthshuthee. Not 30 yet!! :winky They insisted on an education for me and allowed me to take part in many types of sports even if it didn't seem to safe to my mum and hence her hesitance.
She still doesn't quite approve of the sports that i do (scuba diving) or my lifestyle (staying up late, going out too often, taking on too many things) but I know that they are proud of me. I am one of the many thals here in Singapore who is managing well (except for my ferritin... :banghead sigh... ) and I thank my parents for that. For believing in us when the whole world didn't. Friends who know I'm a thal feel that they can't match up to how I lead my live - with so much energy. My point is that I'm glad I was treated like of my friends. Very rarely do I feel any different. Only when it was blood and desferal time... I am proud of being a thal most of the time (when I'm not depressed).
Yes, depression. THis is something I was and am still struggling with. Now that you mention, I do find that I get pretty down when its nearing my transfusion date and much better when I'm fed. But I still do get into bouts of depression on days when something triggers it. I noticed that this cycle only happened recently, few years back (maybe I finally matured!!) and it was by the situation/s I was going through. Its something I've been meaning to ask my doctor for some referral to some psychologist but I'm not sure how to bring it up to her. How do you tell a doctor who's been treating you physically you need help psychologically.
How do you bring treatment to a new level that includes psychology treatment when treatment here is supposed to be first class. How would doctors be convinced? Do you need special trained psychologists / psychiatrists in thal area to manage a thal?
-
Hi Andy ,
Thanx for ur help,i've read all these adverse effects on the leaflet came with the medicine before starting it,, and that's why i think that it's worsening my condition,but dotors insists that i should continue with it,,another doctor advised me to take it with Motillium(for nausea).
Thanx Kathy,
for ur kind words,my blood pressure is mostly on the low side,,and i sweat a lot,, so i am advised by docs to take a lot of fluids,and i do my level best for it.
Yes u are right that this site has effected our quality o life in different ways,,doctors are never that much informative,and i don't know but i felt that when i ask so many questions to my daughter's hemo,it offends her some how :dunno,but whatever i am learning here, i want to share it with her.
ZAINI.
-
Hi Andy,
I'm glad to read what you've written. My mom ignored my symptoms but over-protected my behavior since I was young. I am seeing a therapist who diagnosed me of childhood PTSD and anxiety problem. I just learned how to expressed myself a year ago after 40 years. I tried not to feel I's worthless anymore. But sometimes when I have additional things going on which lower more blood cells, I really have the thought of 'worthless self' again. My mom always complain why I was different than other siblings. I always thought that I was abnormal. I also have the anxiety of not be able to go back to a normal life.
I always compare with my husband who is a physical healthy guy. The more I see he's energetic and I'm fatigue, the more he complains that I am not an endurance person whom he is, I feel very hopeless and depressed. I don't have energy to keep friends or go out. I pray a lot. I believe my prayer was heard. That's why I am brought back to this site after a year.
-
To Teresa.
I hope you are feeling better to day,
Yesterday is gone and we are facing a brand new day.
I hope you continue to post and try to learn about how to cope the best with your situations,
I have compassion for you and I'm really sorry if I hurt your feelings,It was not my intentions.
For your well-being, I hope you see it in your heart to believe and to see the sincerity in another.
free yourself, don't harbour recentment towards people.Its not worth the effort. you need your energy to fight the illness.
I ampathize with you .that is because at one stage or another I've felt like you mentioned in your post.The people on this web-site has been a tremendous help to me and I am so proud of the friends I have made here on this forum.I wish the same for you.
Try to achieve peace of mind ,It too, hard to be at odd ends with other people,
We all have the power to change what we don't like with ourselves,
Have a nice day :grouphug :grouphug :grouphug
With Hope and faith from Kathy
-
Kathy, you are so lovely :hugfriend
Teresa, togather we will be strong. We are all here for you. Please do share you pains with us. I know how you feel cause stress and anxiety are familiar with us all and we can feel for you more than any one else, please keep posting :hugfriend
manal
-
Depression is too widespread a phenomenon for it to be linked in anyway to having thal, study on any sample of population in the world would turn up some depression. Statistics show that almost every human being will go through a phase of depression some time in their life.
Now, when it becomes medically worrisome is if; 1) the depression goes on for too long(over 6 months); 2) starts disabling the person; 3) there may be no known explanation for the depression even to the person themself.
Depression with no explainable or obvious causes, often requires treatment by psychiatrists because it may be due to chemical and hormonal imbalances requiring medication.
The kinds of depression felt by thals, unless they fall in the above-mentioned categories, do not require psychiatric treatment but counseling is always a good idea.
Psychological counseling is, to begin with very much a necessity in fact for parents of infants/young thals. However, rather than by psychologists we notice that thal support groups, other experienced parents of thals, doctors who are thal specialists are the best suited to help them.
The attitude of parents I would say, is the single most imp. foundational factor of the attitude in the thals as they are growing up.
At this point, I must mention that I find a lot of negative attitude in many parents I have talked with esp from rural areas. This is due to the tremendous amount of financial burden they face, with no financial or any kind of aid whatsoever from the government. This is a very different kind of depression I come across with thals and their families, due to the varying standard of medical treament and financial burdens faced by the thals in India. Everything is (so) totally and completely left on the parents of the thals to handle on their own. Thankfully,the standard of treatment and knowledge amongst doctors has shown a great improvement from couple decades ago. There are so many parents as yet who are unable to afford even filters during blood transfusion for their children. While in many developed countries the filtration of the blood is done at source of collection itself, which removes/reduces blood reactions immensely. When the parents have to see their kids suffer more than is required by any thal in many a place in the world, - like regularly having reactions during blood transfusions...I would wonder, who in the world, would not get depressed ? [there are differences in the struggles faced by thals, geographically: and this I will try and post about later].
As Andy said, anemia when the hb is low often causes depression, lethargy and apathy which unfortunately some 'non-thals'assume' to be laziness.....lol So,this is a vast topic...could write a book on it.
Thals also have multiple thal-related probs and complications..one of them being diabetes. There is a medically proven connection between depression and diabetes.
My phase of depression was when my medical reports showed a severe case of osteoporosis which later turned out to be osteopenia. (It was my childhood fear revisited, because I had fractured the same leg thrice during junior years of school. Missed a grt deal of school work of course, but somehow managed to stand first in class that year, first grade.)
Although,the psychosocial issues that are faced by thals all over the world, as outlined by Andy are just as imperative to be understood and need to be addressed.
Bottomline of it though, I'll say that ALL thals,their parents, are such warriors, such courageous people that I think we are like the Spartans................we do not think so much of the outcome of our battle in life, but we all will fight to the death. When I think of the courage we all have, I feel we can teach any people in the world how 'NOT to be depressed'. People derive courage and inspiration from us and feel silly to whine or complain, and I always smile when I hear this from anyone.
:biggrin
-
Thank-you Isis,
Nice Posting :clap :clap :clap
We need, all the help we can get to understand,this debilitating illness .
Kathy
-
Shilpa,
That was great :hugfriend we need more and more posts like this one,plz keep posting.
Zaini.
-
I believe you can link depression to a lot of other disease, if not all other disease. I got a friend ( UK) who suffers terrible from Ulcerative colitis . Her depression is more worse than me. Though she is the best student of her class, or even her level.
I recognize myself in those stories. Besides that I have been nag at school. Especially at primary school, they ignored me in the last year of primary. Pupils and teachers stopped to talk to me. I was 12-13 year when this happend and I really didn't wanted to exist.
edited
-
Dore,
I am really sorry for what you've been through,life is very unfair sometimes,but we are human beings and we have to make the best we can,and don't worry,the friends you lost,weren't really your friends,because if a friend of mine is feeling lonely ,i'd want to be there for her,i won't leave her,even if she is trying to ignore me,so it's not you,it' them.
We can have our differences with our parents,there is nothing bad in that,they and you both are human beings,i know it's hard to believe sometimes,but they love us,it's just that sometimes they are unable to express.
You are a very sweet person,i,ve never met you,but i can sense it,just believe in your self,you'll make better friends who'll stay with you forever.
And remember,we all are here for you.
Love always :hugfriend
Zaini.
-
Thank you for your kind words, Zaini :)
-
Has anyone here taken anti depressants or anti anxiety medication? Would you kindly share your experiences with depression or anxiety and whether the medications made any difference? What else is helpful? Cognitive, behavioral therapy etc?
Thank you all for sharing your thoughts,
Sharmin
-
Sharmin,
I seriously think that the question of anti depressents is not for yourself, atleast for a stronger person like you. Is this question related to denial of exjade for Little Mr. A, sorry if I have made a wrong assumption here.
-
Hi Canadian Family,
Actually I was exploring ideas for thal major patients who face depression and anxiety especially during the teenage years. Many young thals will face these issues - so I thought I would give the older thals a chance to share their experiences with medications versus other types of therapy in order to prepare the younger patients if they ever feel sad or anxious.
I am disappointed about the exjade issue, but not to that extent :wink I am going to keep working on it :)
Thanks again for your concern and wonderful advise :hugfriend
Sharmin
-
:biggrin
-
It would be very helpful if some of the adult patients could give us some input on this topic. Adolescence can be very difficult for thals as they learn more about thalassemia and its implications. Of course, this can be made even worse if teens are exposed to old information that gives a poor prognosis for thalassemics. I want to ask that some of our members who have gone through these years to give us some insight in how to recognize and deal with these problems as they arise. This would be of great help to both patients and the parents who may become distraught trying to deal with the changes they see in their children. As always, I think our group can be leaders in this and also be very effective. I am sure everyone realizes how many parents of young children are members of this group and as their kids grow, these problems will become more evident. Let's do what we can to help everyone make it through thse difficult years.
-
I have suffer and still suffer from depression and it has been, for most of my life and was not diagnosed untill my mid forties.
The physchiatrist still is trying to pin a name on my condition,Ive told that I have different kind of disorders,and yet I function and articulate appropriately in all my doing.I abide to all so call society, mores , rules and expectations, never committ and crimes :rotfl :rotfl :rotfl raised a family and my children are a successfull in their chosen field.It was hard but I did it to the best of my ability.yes mostly on my own because of my depression, it was hard to maintained a relationship and my husband left with another woman I still managed to cope.
I took anti-depressants for appoximately three years and to my experience, it did not help, just rendered me in a stupor.and prevent me from functioning effectively, with my daily living activities.(I hate being like a robot). :(
I find out that by taking folic acid and eating the right diet thats includes fresh vegetables and fruits, non process food ,fresh fish, low fat, low sugar ,low salt, and maintain an acceptable blood glucose level , seems to help.some exercise can help too, I do as much as I can tolerate.
Having said that I still struggles at times with my moods.
I found that is also help to have a good outlook of life, even at the worst time. Over the years I have learnt to accept what I cannot change and live with my life the ways it is.
I believe that each individual needs to learn how their body function and work with it.
Thanks to my good friends that see me through my down times I'm gratefull to them.
There are no quick fix to depression, no magic medications, I believe that medication makes an individual worst that is because that person has to cope with the side effect
It is not easy still we are all here and we have to make the most of our time on this planet
I wish to tell everyone that is suffering from depression the main thing is NOT TO GIVE UP , is the key to living a reasonable life good luck
Kathy
-
Hi ya all,
dont b sad or feel depressed bcoze of anything .. just say thanx to GOD that he made and blessed you with everything , dont cry for the onething ( this diseas ) try to laugh for the many things HE gave to you ... worries , tensions and this kind of stuff is the a part of life, its a pinch to our body to make us feel that we r alive , without these pinches life will have no more reason to live and to strugle for .... i have alot to write under this toopic and i will keep writing under it, ... b sure i m always here for you all ... :)
Best REgards
Take Care
Umair
-
From my limited expierence with non thal people who take anti-depressants, i observed that they do no good. Either they continue with their depression or continue being dependent on these medication with all their side effects.
Depression is usually a symptom of a ''problem'' one suffers or can not deal with. Usually i can see that both doctors and patients tend to concentrate more on dealing with the ''symptom'' rather than the ''problem''. I am not generalising here because i know that sometimes depression is a result of imbalance in some chemicals of the brain and in this case medication is a must.
From my point of view i believe that depression in thal teens should be addressed with behavioral therapy teaching them how to cope and face challenges rather than medication or at least limited usage of medication. We don't need to end up with teens depenant on anti-depressants.
As parents of children, i believe that our target is to work on preventing depression in the first place rather than how to deal with it. I know that it is not that easy and we have many challenges and i know too that such situations have many sides to deal with but i am speaking about a target that each parent must work hard to reach because we are AWARE and that what makes all the difference.
I believe that the way we raise our children and our ability to ''neutralize'' their life with thalassemia is the way out. And this does not start at the age of adolesence, but rather earlier in childhood.
I do believe so much from my expierence with my children, that parents can ''brain wash'' their children with whatever ideas, believes, style of living at an early age. The important part here is the timing or when to start before it is too late. Any thing in the world has two sides, the good and the bad and the good side of thal is how to make it part of a child life rather than a problem in his life.
Maybe i sound too optimistic since i am not in the shoe of a parent dealing with thal teen but at least this is how i think is the way out. This will put a lot of stress on parents because they will be always searching and making sure everything is going well and above all ''wearing the face of everything is going well with a big smile''. I know how hard this will be cause many parents are already having many intervals of anxiety and depression themselves because many times in our lives while dealing with thal, we end up waiting for the unknown or problems keep pumping up every now.
I am not sure if i have discussed this before or not, but more than a year ago my son had ''depression'' , i am sure that children have their depression too. He was rejecting being obliged to take his supplements or to be poked with needles for his monthly check ups ... he simply hated the routine.
At that time i actually reacted very coldly (which is usually not common for me in such situations) and i simply told him okay don't take any thing anymore and actually i did for a couple of days. The third day i started talking with him about the concept of ''consequence'' in general. I told him that the quality of one's life is a consequence of one's doing. I gave him million of examples that he can grasp like consequence of studing, eating ,lieing, behaving ....things he can understand and that their is always bad and good consequence and he has to choose and be responsible for the bad/good consequence.
Then it pumped in my mind later to get a scarf and wrap it aound his eyes for an hour (i started it like a game) he kept falling and hitting everything around him in his own room ( he had a lot of bruises that day ) and at the end i just told him in simple words (after expermenting in a practicle way) which is better monthly FOREVER pokes or dealing with the inability to see. He laughed and laughed and told me '' no i prefer needles, i love them :rotfl'' From this day, we have no problem about the needles any more. I know it is not the end of it and with days other things will appear again
My son does not understand the word thal yet, but he knows one fact.. that his body is different than his sister and he needs different things than his sister needs. I am raising him on the concept of ''difference'' rather than the concept of the ''disease''.I stopped telling sympathysing words to him when he gets hurt once from the needle or when any of his medications taste bad because sometimes our words or looks for our children makes them feel ''sorry'' for themselves.
Now i would rather tell him how to deal with a bad taste (by closing his nose for example) and that we will not spend our day nagging and complaining from a bad taste cause we have alot of other activities to do in life and we would not be smart staying all day talking about a ''taste''
Now i would tell him when he is sometimes get hurt from a needle, that this is a normal thing and it could happen and the pain is temporary and is nothing compared to the pain he has when his knees get wounded while playing football.
I just don't want to make him feel sorry for himself or see this look in my eyes
Too long post :biggrin, but i know this subject will not end because as life goes on we will all face different situations in this so sensitive area
take care
manal
-
Congratulations Manal,
I agree with every word you said. I was raised in a much more difficult time than today-in fact I envy young thals as life is much more easier for them with the conditions of today-but my mother and father were wise enough not to make me feel sorry for myself on everything. Imagine that when I went for a transfusion to the hospital, my mother kept me apart from other mothers who talked pessimistically about their children. She didn't want me to listen to their conversations about their children who were "going to die and they didn't have much future ahead of them."
At the age of sixteen I remember myself going through a big crisis. I cried and cried and asked why this happened to me. I did all that crying alone, on my own in my bed at night and kept it all from my parents. They never knew anything, that was my secret. However, because they had raised me correctly and made me strong I overcame with it, without any medication, antidepressants and all, totally again on my own and that never happened again until today. But I remember this crisis very clearly and now I can classify it as adolescent depression.
So I think how you put it, the way you use with Ahmad, is correct. Make your children feel strong, happy with themselves, coping with thal,find meaning and interest in life and everything will turn out well.
Lena.
-
Thank you so much Lena for your re-assuring reply. I needed it so much because i deal just with my instinct which i hope it is right.
Hats off Lena for your parents for their enlighted thought. Even if thalassemia was in the past prognoised as a fatal disorder --which is not the case now--why make a child suffer by depriving him/her from hope.
Please thank them for me :wub
manal
-
It is in your post Manal that I recognised my parents.
Please be free to ask anything as I have survived through harder times.
Thank you for your kind words
,
Lena.
-
When i look at my daughter,i never think that she might get depressed about her condition in future,because she is quite a strong child for her age,but who knows,may be i am wrong,i have always tried to treat her as same as her brother,nothing much different,and thalassemia is very much a part of life for us,monthly transfusions and daily medicines,i never let her think that there is something wrong with her,and i keep her away from the people who think like that.
I am a bit of a strict mother,and i never let her off of anything just because she "has" something wrong with her,she has never thought that she can't do anything just because she has thal.My mother often says"i wish she doesn't have to go for transfusions" and my answer always is "i really don't mind it ma,coz i know its giving her strength and helping her grow properly and my mind is at ease".It may sound stupid but this is the it is.
I hope she won't think negatively in future,because right now she is just a child bubbling with life,and i'd love to see her that way always,and i am working hard for it.:yes
Zaini.
-
Hi all! I know what you mean, although it wasn't me who felt depressed but it was my sis, She was doing fine from all the blood transfusion and i.m. injections of Desferal but when she became a diabetic she started not taking vitamins and chelating ( this was when we already had ours pumps) She denied having diabetes at first and still eats sweets and anything she's not allowed to eat or drink, she struggled having to check her blood sugar regurlarly and inject insulin to chelating. But now I think she's doing fine. She's taking Exjade instead of Desferal. She's able to control her sugar now even better. And she once in while taking her vitamins, better than nothing right? :wink
To Zaini,that's the attitude!
-
Hi ya all,
the topic is thals n depression ... now i m feeling depressed bcoze one of my friend told me to post my opinion in this thread after reading al this thread, and i m depressed bcoze i even didn't read even completly, And'ys first post under this topic :grin ... . so , i m a thal and this is the reason of my depresssion aahahhahahahha :rotfl :rotfl :rotfl ..... Just kidding :grin ... i think i m still that cheeky as much i was a litttle ago ...
Umair there is nothing to laugh about about depression there are many people out there suffering with depression some even kill themself as a result of this illness.
Try to refrain yourself from being sarcastic you disappoint me your behaviour is not funny on this occassion.
As I observed ,I feel that, we human-being has a tendency to think we are better that others
and we think that if a person is facing a problem they are a low life ,Little that we all know that if we live long enough we might have the time when we have to face similar issues.
I dont and didnt ask or need sympathy,I knew what I was doing when I typed my message,I am not ashame of my illness
There are no perfection in life ,good things or bad things do happen to good people
I am gratefull I am loved by my sons ,sisters ,brothers and some close good friends and most of all I know who I am I love myself and I'm here,I know my strength and my short comings. I thank god for being me
Kathy
-
Hi Kathy ,
sorry if i hurt you ... i didn't meant to hurt you or to say that i lived a depression free life or i lived superior life than anyone else or to express sarcasm .. sorry if my last post hurt's u .. i have edited that post ...
you know Kathy , when i was new on this forum , since then you're one the person those are inspiration for me , bcoze you're thal and struggled enough in life , that's why you are an inspiration for me , you're one of the thalpal who changed my way of thinking.. you are thal and in ur 50s that was the reason i inspired though later i got to know u r not thal maj , but at the right time ur profile gave me strength , at the time i needed ans looking for the info like this .... ..
----------------------------
@ Topic
Hi ya ALL
yeah , i know i m not the same umair , i was.. i m changed , really much changed, and i observed these changes in myself .... i also been depressed on many ocassions in my life... and i shared those moments here on thalpal too .. . the time i had knee aches , stomach aches ( many times ) , then malaria , then crampy leg bcoze of wrong prick for desfeal and lots of other moments too , i sahred a few of those moments here and many are still un-shared ... i dont think that i lived a better life than others , as you all know that i suffered to the condition u people cant think of that ( like wheelchair era , and osteprosis and diabetes and stomach ulcers , iron overload and symptoms of congestive hheart failure ) .. the only differnce in u and me is i always treat myself like " dont cry for the thngs u cant change , try ur best and leave the results on GOD " this is why i m satisfied to my life i have lived and gonna live ... i m not better than you people, i m not living a super normal life but thanx GOD i m still alive. .. Thanx GOD i have a pair of hands and foots and have everything normal , i thanx to GOD for the things HE blessed me with and will not cry for the single thing HE took away to me .. its Blessing of my GOD that HE took sumthinng away to me to always keep me reminding that m nothing , and i cant do anything on my own efforts and i always need blessings of HIM.. that's the way i think, that is the way i cope with my depressions n my problemes ... i have been through the extreme conditions , but i never been on anti-depresent medicine ... depression is the game of mind , be strong at mind , and b satisfied to your life , dont look at the thing u wanted but u didn't get , look at the things u got ...
try onething , start counting the blessings , and when u complete that list then contact me, and tell me isn't that list is longer than the list of things u dont have ?? .. count each and everything of His blessings , i bet u cant write the complete list of His blessings ... that's the way i think, that's the way i satisfy myself and my mind ... that's why i m satisfied to the life i have lived ... and for future , i have no plan for my futuer ... i m living and trying my best to get all the best of life and i have leave/left the results on GOD , so i m not worried anymore abt my future , bcoze my future isn't my probleme ...
-----------------------------------------------------
i hope my this post will not hurt anyone :( ... i haven't red all the replies .. replies are too long to read , it seems like you people are takinng reveange to me in the same shape i took your time ( by sending long relpies to your posts :grin ) ....
Best Regards
Take Care
Umair
-
Come on Umair,
you don't have to apologise for anything -- we all know you mean well.
Lena.
-
Thanx Lena , for understanding my point of view :)
Best Regards
Umair
-
Thank you everyone for your very informative responses to my question. Raising a young thal, I am realizing that with proper treatment thals can accomplish anything they want to. I also realize that they will face challenges from time to time.
In dealing with these challenges, dealing with pain and discomfort and the time that is required in dealing with the disease they may have some ups and downs. Especially in the adolescent years when thals become more aware of their blood disorder and its implications on their lives - they may face some anxiety and some may have to overcome depression.
As Zaini, Manal and some of the others have said - the way we raise them will definitely help them deal with any fears, sadness or anxiety that they may have. Sometimes, the time committed to thal can put thals behind in other aspects of their lives and this can lead too stress. Because lil A is 11 years old now, I know that I need to find new ways to help him deal with stress and any feelings which he may have due to thalassemia. I definitely think that learning to look at the positive side of every situation is going to serve him well. In whatever way that he can, I need to let him take charge of his own life and happiness so that he does not fall into self pitty and helplessness. While he was sick he was down and he felt a lot of anxiety. We had several talks about attitude and finding the silver lining and I think that it did him some good. Also, whenever his little sister is down - I let him talk to her about why she shouldn't let things get her down. He did a very good job of helping her. Since then he has been his normal self again. I will post his comments later, they were quite profound.
I learn so much from all of you every day. I also learn a lot from adult thals - Lena I am glad to know that if we let our kids know that we are there for them and if we give them strength that they will come around. Also, Umair I am happy to learn how your sense of humor and your faith in god have helped you deal with the low points in your life. It is unbelievable what you have endured - being in a wheel chair, having to lower your iron overload, facing heart failure, losing your best friend, diabetes, hepatitis - and yet you never hesitate to help others - you never stop laughing in order to make others smile. I cannot believe that you are only 22 years old. Hats off to you my nice friend, you are such a great inspiration to us all. It is so important to keep encouraging each other - to build each other up and to not tear anyone down. We are all in this together, trying our best.
My son has a lot to learn from all of you - about thalassemia, about life in general, about emotional ups and downs - and how important it is to take control of your thoughts and feelings to live a better life.
Thanks again guys :grouphug :grouphug
Much love,
Sharmin
-
I will post his comments later, they were quite profound.
Please do Sharmin, will be waiting for them :hugfriend
manal
-
Glad to have helped, Sharmin.
I have tried to put myself in my parents' shoes and think how they might have faced my thalassemia, their feelings, their attitude and their role. That's why I understand yours and Manal's and Zaini's and every parent's anxiety to make things right. It is really of great importance to act normal, as a family does with every other kid and let your kid realise that thal is a status, a situation to be handled, not something "bad" or "out of control".
Lena.
-
Depression is a bad thing to encounter whether one is thal or non thal or even thal minor...
Even if there maybe medical intervention for the same, I personally feel that it is eventually upto the person to gear up courage and whatever else that is required to come out of it...the medicines may of course help as also the support of loved ones...After all, like it is said, 'God helps those who help themselves'...
I think depression is like a small battle one may or may not have to wage war with...sometimes one is incorrectly or inadequately armed for it...and sometimes the ammunition just takes a while to arrive!So those who have waged it will know how to plan the attack-defence and offence for the next time!
Anyways, troubles are different when one deals with as others and their own!So one must try to understand that each individual has their own way of dealing with depression and it leaves its impact on them..I guess what is important is that it should be picked up and dealt with fast...
It is nice to know that there have been such parents so as to teach children how to live their lives well and learn to face all that comes alongwith it!
Maybe the best way to end this post here would be to reiterate that here at this site, we will always have friends to help us face whatever problems come along our way...
Madhavi
-
Umair I am happy to learn how your sense of humor and your faith in god have helped you deal with the low points in your life. It is unbelievable what you have endured - being in a wheel chair, having to lower your iron overload, facing heart failure, losing your best friend, diabetes, hepatitis - and yet you never hesitate to help others - you never stop laughing in order to make others smile. I cannot believe that you are only 22 years old. Hats off to you my nice friend, you are such a great inspiration to us all.
Couldn't agree more :yes.
-
Lena
What a lovely picture, it is nice to see you dear :hugfriend
manal
-
Thanks for your kind words, Manal. I am sure we'll meet some day in Athens or in al Qahira.
Lena.
-
Lena , Sharmin n Zaini , thanx alot for your support , .. i m not upset of that , nothing can offend me easily and it was nothing to make me feel upset or to make me feel offend .. its okiey , dont worry abt anything , i m absolutely fit n fine .... thanx for being there :) .. i wanted to login a day bfore yesterday ( on 29th of September) , but unfortunately i didn't , ... then i planed to login yesterday ( on 30 september ) but that was my Tx day , when i reached back home after Tx Desferal drip was ON , and one of my hand was occupied with that drip , so i decided not to wrtie at that time , bcoze it was difficult for me to type with one hand , and that IV desfral ended a few hours ago after that i had to go for dinner then to sit a few hours with my uncles and grandma, so that's ithe reason why i m late to come and reply you people :grin .. b sure, i m not upset bcoze of someone's remark, and everything is normal on my side .. be sure , i will not leave u people alone to enjoy on this forum , and i will not stop eating ur brains :grin .. i m always here ... :)
and BTW , thanx for liking the way i eat ur brains hahahaha ...
( i dont know why i m hesitating to go for Tx since a long time, i didn't got the reason why i m behaving like that ... my recent Tx is after 20 days , and last tx was after 17-18 days , i dont know why i m delaying my TXs too much , and again and again , its continuesly 4-5th time that i delayed my Tx and delayed for very long , my Hb was below 8.5 everytime since last 4-5 Txs and this time it was 7.8 ... i still won't to go but my knees forced me to go , whenever i delayed my Tx that results in aching knees , yeah my knees start aching o low Hb everytime .. and that's wat start happening again a few days ago ) ... yeah, i know my Hb is very much low and i need a few extra Txs , seriously low ...
Best regards
Take care
Umair
-
Come on Umair, I understand delay of your transfusion when there is a blood shortage but to delay your bt on your own, that's crazy. You harm yourself. Do not do that to yourself.
Lena.
-
Hi ya Lena ,
i think i was discussing things out of topic here , so , i posted reply under another thread plz, dont mind ( i hope u will not mind ) .. here is the link :
http://www.thalassemiapatientsandfriends.com/index.php?topic=2112.msg31146#msg31146
Thanx ya for reply,
Best Regards
Take Care
Umair