Relationships in thalassemia

     Sharni,  I can really relate to this.  Thank you for posting because I have been going through a very tough time with a member of the family whom I have chosen to separate from our lives because of their unnecessary reactions in past situations.  Once I found out my little one was coming I promised myself that I would not succumb to a situation like that again because it was truly the most emotional time ever.  Unfortunately, some people do not like to be taken out of your life unless THEY initiate this change.  Unfortunately, there are also some people who will indirectly try to make your life miserable for that very reason. 

I KNOW that these things shouldn't even matter...that I should laugh it off...and that is it.  However, it does get to me a bit because that is the type of person I am.  Even though I know that they probably strive from hearing that I'm hurting because of something that is said or done...I still feel it.  Why does someone HAVE to PURPOSELY HURT someone else?  What satisfaction do they get out of it? It almost feels like people like this live for drama and without hurting someone - they are not proud of themselves. 

I really hate that I have let myself even spend a moment of time thinking of situations like this.  I pray every day to be stronger and not think when something is done that hurts me.  It is hard though. I know this person KNOWS that as a family we face a lot of tough moments.  Unfortunately, I think that they don’t stop to understand that we have so many things on our minds as we raise our thals that indirect comments and gestures to hurt us really put MORE pressure on our hearts.  THE TIME SPENT AWAY FROM THE HOSPITAL, THE TIME SPENT AWAY FROM THE EMOTIONS OF WHAT OUR CHILDREN ARE FACING IN THE FUTURE, THE TIME SPENT AWAY FROM INCONSIDERATE DOCTORS, is the time we should be happy and enjoying every moment.  However, they don’t stop to think about that…because it is more important for them to get their point across during those happy moments.   

I know that my child is normal. However, I also know that he needs a lot of attention, love and there will always be something we are trying to overcome with his health.  I don’t let it CONSUME me but I DO get emotional every so often.  I’M ONLY HUMAN.  When these emotions are mixed with emotions brought on by the negative people in our lives….it can really bring you down HARD no matter how much you try not to let it. 

In the end – it brings you to feel HATRED. A feeling I think rarely develops unless you are tested over and over again.  It is bound to happen.  I have actually been told by the person who continues to test me that I am an unhealthy person because I’ve held on to things that have occurred.  This person apparently has forgotten how horrible their actions were and have been up until today….it’s actually more unhealthy to have them as any part of my life. 

Charishma,

I completely understand.  Parents depleted by the their child's disease don't need this extra pressure.  It would be ideal to have support and understanding, even indifference is tolerable - but hostility is not welcome.  You are doing the right thing by putting your child's and your family's needs first. 

Sharmin

zaini and mariam i totally know what you are talking about with the marriage issue and familys issue.

Like all elders in my family and inc my parents treat me as some fragile thing, i am the ill one therefore im not normal. Yet they beelive  i can  lead a normal life in every other way, like work and study but they find it incomprehensible about marriage, that there is no way way i can get married because i have this illness.
its so frustrating y do pple think this, and thats y no1 wud marry me as they think i hav a terrible disease, so i dont know what to do. pple ask y i am not getting married like freinds but i dont know what to say becuase the people have to many prejudices.

Hey all,

I know this threads a little old but I had a burning question and this seemed like the place for it. I'm a 23y/o Indian girl and my parents wanted to start looking for guys for me to marry and had wanted me to a profile on an Indian marriage website..... I rolled my eyes at them when they first told me this, but after thinking about it for a while I decided why not...I'm open to relationships and I want to find love and hey if they can help, then cool.....and so i created a profile....and then another thought hit me...When is it appropriate to tell someone that you met on a marriage website with the intent of seeing if maybe somewhere down the line you may get married, "Oh by the way, I have a blood disorder that has a major impact on my life and who I am"?

Its on my profile under the health information, but really no one reads through that stuff....Telling someone the first few times you talk to them just seems inappropriate and waiting until feelings have developed seems even worse. I dont want to hide anything because I cant hide such a big part of me and don't want to anyways. I need someone strong enough and who loves me enough to accept everything about me but I just dont know when something like this should be discussed...

Any advice? I'd love to hear everyones input, but especially anyone who is married or dating a thal...when is the ideal time between "hey I just met you" and married to tell someone about thal?

Hi Archana!

Frankly speaking, the ideal time for me to tell about thalassaemia is first meeting, but its different when you have a chat with someone for about 5-15 minutes and tell them that you’re thal major than if you write up on your profile ‘I have a disease etc. etc’. Because in face-to-face meeting the person would have listened to your amazing personality for some minutes and after that when you tell him/her about thal he is surprised but impressed already. People tend to see you as a brave and courageous person that you have reached this far in terms of education, job, life etc. despite the illness and think of your illness as a part of your life that had little effect on your physical stature (if you hadn’t had major bone changes).

But when its online, no way, not that you’re thal maj I’m saying this but ‘generally speaking’ – online relationship things aren’t very faithful or serious one, you can’t judge any person by just a profile in which he has put cool glasses on and looks dashing. Instead of finding good relationships I heard many people got hurt by non-serious and non-sense people they met from online dating/matrimonial sites.  Not to overrule exceptions though.

What I suggest you is REFERRAL! Look around you -- relatives, family friends, someone who knew you --  ask them to find someone for you as referral really works. Normal people around you can really advocate your case by comforting non-knower’s that the girl is very nice, has capabilities, faithful and pious person and the disease is not itself as threatening as it may seem  and that they have seen you all your life and never felt you ‘very’ different than normal people.  For an Indian girl, I think your girlfriends and their moms can really really make the difference, the objective is not to reach them just for marriage but to get chance to explain yourself, show your personality, give yourself more exposure, more friends more people and more probability.

And just in case you meet face-to-face with someone, tell the guy open-heartedly that thalassaemia is just one part of your life-style and you do not take it as a disease and if the guy is really good in nature, he will accept you. For others who do not, I don’t think they even deserve you.

Hi Archana,
I think that writing on this issue is little bit difficult for me.
Hiding of this problem is not good and you are ready to disclose it at suitable time is really needed to have a long term healthy relationship.
As you are an Indian and have respect to your family, i would like to ask you that what kind of guy your family and you like to have? means Thal or Non Thal or Normal guy?

Hi everyone. I am new to this forum and I find your posts very helpful and heartwarming. 

I would like to ask for your advice regarding getting in a relationship with someone who has thal major.

I have a very close relationship with him and we have known each other for a long time. I am fully aware of the condition and he has explained it to me and is freely talking about it. I never considered it as an obstacle and most of the time I don't even think about it as he has always been very strong and confident. I know that I want to be with him as my feelings are very strong.

Lately, it seems that things have changed and this is heading to something romantic and I am wondering how hard it is for you to consider getting involved in a relationship (especially if you also have Hep C - which I know is not that easy to transmit but he has told me that he got it from a transfusion). 

I know that he must have many hesitations as he was never in a relationship for the past few years and I am doubting whether he was ever involved in one. It would help me a lot if you could tell me how I could make this easier or if you had also been in a similar position as I am trying to put myself a bit in his shoes in order to realize how hard it is for him psychologically. 

Thank you beforehand for reading this

Warm greetings, Mary

Hi to everyone ,
It took a lot of strength to write down,
 I am guy from India,still looking for jobs , My girlfriend is thal major. we met 7-8 months ago, everything happened so fast as we were just waiting for each other. she did tell me about thal in our 2-3 meeting. but i never considered it repealing as I liked her or should i say "I loved her". time passed very fast, we started seeing each other,got attracted by each others personality, she is so strong,never made me feel like I'm with a thal, i did the same thing "never made her feel like she is different from normal people". We want to be together forever,want to spend rest of our life in each others arm or in short "we want to marry"(i dont know whether it's too early for our relation,only 8 mnths). but living in India, a person is restricted in traditions.my family wont accept her,as she doesn't belong to my community +  thal.they even find it difficult as i have a girlfriend. so there is no hope from my family and that stopped me to tell them anything as it will create a family drama. Talking about her family , they are much much better than my family, more modern,more supportive , her parents ,grandparents had love marriage, so its a good sign for me.But as a father everyone wants a perfect match for her daughter.Her father wants a govt employee(as it is considered safe ,more valuable,medical help etc etc ),boy's family must accept his daughter's medical condition,supportive, doesn't belong to village(as in my case,bcoz a family belonging from village is less supportive and that is 100 % truth ),and the boy must love her as no one has loved anyone...  except i love her nothing is matching the criteria, and she says " we cant make our families angry or hurt, if we spend more time together than it will be so difficult to get apart".. than we decided to move on , and not to talk again or meet. but it's not possible as we have tried it a lot.can't even think to live without each other. she cries a lot bcoz of this situation , and i feel responsible for everything.Always wanted to make her happy,smile ,and now tears in her eyes ..cant express this feeling.makes me sad and teary all the time...I used to ask her daily about her medicine and breakfast, lunch,dinner,whether she is alright or not, went hospital with her.Now she asked me to stop everything as these things show more love from me and she cant move on (both of us trying to move on ,forcing ourselves )....still we are seeing each other but there is a necessary mental gap maintained by us and that hurts..... don't know what to do , life was much better with watching her smile.

may be you find it a boring story but just wanted to share it (not to get any sympathy but to make you aware about 4th world called "INDIA" where these type of situation occurs,where love is not considered enough to take care of a person,where traditions,society comes first and love in the last  ).

I apologize if it seems offensive to some of my Indian brothers and sisters.

and pardon my English.

Karn,

I understand your desire to be with the one you love but I also understand that the parents want their daughter with someone who can support her and can afford her treatments. My advice is that you apply yourself and work to get a good job or career, so that the family sees you as one who can provide for all the needs of their daughter. If you have the determination to make this happen, you will have success.

Karn,

It pains me to read all this.

A negative attitude that your family, that people from villages are not going to support you, is totally wrong.

I am married to a healthy person. We had no acceptance issues because we were determined and convinced everyone (his family specially) with love. Till to date, they have never considered me a sick thal.


But most important thing you should consider is having a good job to be able to support a thal spouse. I have said this before, we are expensive. Monthly transfusion, periodical blood tests, scans, MRIs are expensive things.


Have faith, grow strong as a human being, stand on your feet.....then I am sure, everything will turn out right.