Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: Sharmin on October 07, 2010, 10:25:30 PM
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Thalassemia is a complicated condition. In most cases the patient looks well and in most cases the patient's suffering is invisible to those around them. Because of this, even those who know about the condition often don't understand the patient's needs or appreciate the time that must be committed to treatment and care. Schools, employers, co workers, friends and extended family can be a great source of support - but sometimes they need to be managed as much as the disease itself.
It is very important to learn how one can develop a tough skin in this regard. Hopefully, to maintain the majority of the relationships - and seek advocacy when required (with regard to educational institutes and employment situations). In personal relationships, and in extreme cases one has to choose who is worthy of their valuable time - between the usual "busy - ness" that is in all our lives - thalassemia requires a lot of time commitment for maintenance of good health. The remaining time is yours - to spend and share how you wish and with those who add to your life.
By nature, people who have thalassemia are a tough breed. Tough due to years of endurance and patience, often mature beyond their years. We have learned not to judge others and be understanding of other people's situations.
Parents and family members of thalassemia patients are exposed to this as much as the patients themselves. I am fortunate to have unconditional support from friends and family over the years. In dealing with antibodies, rituximab and IVIG - we have had very frequent hospital visits - full day infusions of blood, ivig, and rituximab. Often being in the hospital more than once a week - we have had up to six full days in the hospital a month - along with the time and effort required outside of the hospital.
While much of my family has been supportive - I have had just as much agony managing those members who do not understand and have chosen to constantly be at odds with us for not making more time for them - to the point of being verbally abusive toward me for the last 12 years. Although it has been painful over the years - after the most recent incident of this nature I feel numb. I realize that I need to focus my energy on maintaining my children's health and future - and in order to do so I must have more mental clarity and good health myself. Under this unnecessary pressure I feel like I would crumble. It is harder to watch a loved one go through treatment than it is going through it myself. After much contemplation, 12 years worth, I have decided to discontinue association with people who have chosen to drain my energy and behave in these ways toward my family - because they refuse to understand the limited amount of time we have to dedicate to them. Were it not for the extreme emotional blackmail and verbal abuse - I would have felt obligated to allow it to continue. Thankfully, my husband and I have chosen to protect our children and enjoy the many positive relationships we have.
Has anyone else encountered similar situations? and if so how did you deal with it? I believe that it will help myself and other members here to have such a discussion. I know that everyone will be supportive.
Best,
Sharmin
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Dealing with family is often difficult even under the best of circumstances, and we often find that family can be terrible when things aren't so easy. Add a problem like thalassemia into the mix, and the family you expect to understand the difficulties of life with thalassemia, just doesn't get it. Maybe we can assume some lack of understanding among friends and co-workers, but when family doesn't get it, it hurts just that much more. Lisa went through some problems at work created by a supervisor whose understanding just wasn't there, and who felt that Lisa was making excuses for missing work. In reality, Lisa was slowly dying and worked until she could not do it anymore. This supervisor later came to visit Lisa while I was also visiting her at home the month before her final hospitalization. Lisa was so incredibly weak, she couldn't even get up off the sofa to answer the door when I arrived. When this supervisor came in and saw Lisa and visited for a bit, it was a huge revelation to her. Lisa really did have a hard time and really was quite ill. This does make me wonder. If the people in our lives who don't "get it" can somehow be made to see what life is really like, would it have any effect on their ability to empathize? Suppose that relative or supervisor or friend with lack of understanding had to accompany a thal patient for a month and just observe every single little and big thing that has to be done, would they finally get it and get some perspective? Or is it just useless to expect that some people will ever be able to grow enough as human beings to ever "get" anything?
I doubt that my way of dealing with people like this in life by avoiding them as much as possible, is the best way to deal with people, so who has input on this topic? Is it possible to have people like this in our lives if it always means we end up like this? :banghead
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Great topic! This has encouraged me to stop lurking and join in.
Even my husband doesn't understand but I tend to think this is mainly my fault, as an adult thal I have spent my whole life trying to be 'normal'. I think even families do this, being protective of the child and trying to make them feel a part of normal society. It kind of backfires though because in striving to be normal I have found myself being so convincing that people just don't see the ill or sick me. I have become a very convincing actor/ liar! I have never wanted sympathy or help but sometimes it would be nice to have someone recognise what a good job I'm doing. I work incredibly hard as a nurse, my collegues have far worse sickness records than I do. I often feel like a fool turning up to work week in week out with a hb of less than 7 on quite a regular basis. I think this is the most frustrating aspect of having a chronic illness.
I also used to get quite upset that out of my quite large family only my parents donated blood. This was until my wonderful sister who has a serious needle phobia- no doubt caused by being dragged to hospitals as a toddler and being scared stiff to be like me. My wonderful sister started giving blood when she turned 18, something I never thought she would have the courage to do and it was the nicest thing anyone has ever done for me. We don't even share the same blood group but the fact that she would put herself through that all for me is amazing. I think what I am trying to say is that for me the love and support of my sister, parents and grandparents easily make up for the lack of it from everyone else. After all they are the ones who have watched me grow and grown with me. Been there through unbelievably bad times and ultimately understand the difficulties. I don't blame my husband for not 'getting it' to be fair to him he loves me as a normal person which is all I've ever wanted. It's just hard for him to get it because I am so independent, capable and hardworking ( go me!!!). But we are a work in progress and I'm sure if he gets the chance to live with it for 30 years like myself and my family we will eventually all be on the same page.
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Well to me being a thal comes with responsibilities you know constantly having to know what to do in some situations, knowing how to magange your time and whn to tak your pills when to when to study when to give your self a break hehe...
My family are very supportive yet one or two are over protective which is good and bad in a way there for to over come this I had to proof that I was rsponsible enough to e independent and to be counted on, at the same time I do come from a nagitive thinking family hehe any one who knows me will tell you Im beyond positive ;> and I've managed to change their thoughts because of that my sister is now writting a book about positive thinking. So what If my teacher was a pain and didnt understand my condition <manage time> and set an example showing that you can do what ever you want with out being late or absent trust me even at times when things get tough and your wings are broken <FIX THEM> and fly away!!!! its your choice being unhappy wont fix it being positive will attract good things in life its called law of attraction, same with relationship you see someone its somthing about them their character somthing just pulls u into wanting to know them if their positive they will have this charm and people will want to help them
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Sharmin,
You are an incredibly sweet and supportive person yourself,so thalassemia or not,if someone treats you badly you have the right to cut them off of your life,so don't ever feel guilty for that,coz i am more then sure that if it was the other way round you would be the first one to help them and understand their situation.
I have had that kinda crap from "family" too,to be honest who can call such people "family",but hey you can choose your own friends but you are stuck with the family,there are people in "family" who said my daughter's illness in a curse from God,i was hurt and stunned,and i wish somebody would have told them that God is merciful and He never curses someone,especially a child,There are people in "family" who kept worrying about how my daughter would ever find anyone who'd marry her ? and i was stunned that she is just a child right now and marriage is way too far for her.
So what do i do? i still see these people often,coz not seeing them is not an option,but i don't consider them family anymore,so it hurts a little less when they say crap like this,and i remind myself that family are those grand parents who keep checking that Z has a sufficient supply of carao,family are those friends who keep asking about Z and try to help with supplements not available here,and Family are those friends who ask their friends to carry a load of vitamin for Z from abroad even when they are not there themselves,and family are you guys :grouphug who are always there for Z whenever she needs you.
So don't worry my friend,you'll be better off with out them :wink .
Zaini.
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:hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend to this lovely family here at thalpal first of all....
To all those who dont understand, well, probably taking the stand that Jesus took on the cross would be good enough-They ought to be forgiven because they dont know what they are doing...Unless one really lives the life they will never understand what has to be borne....
I quite agree with Zaini that people who cannot treat you the way you ought to be treated should be cut off from your life no matter what the reason....
We spend so much of our life being affected by unnecessary things that it shifts our focus from our primary goals.
Dont fret over such people, Sharmin....
Yesterday, my husband and I were having some discussion about how people without morales achieve success so easily and people like us are way behind...Normally we are always told to count our blessings instead of the misfortunes. But we should also see that if we dont have many joys, we also dont have so many sorrows that others may have!
When we feel that life seems just too complicated and the people just dont seem to make any sense to us, just see how blessed we are with our families and groups like thalpal where we matter as we are and there is no need to be something or do something to be accepted and appreciated....
:hugfriend :hugfriend :hugfriend again to all of you....
I have seen that if someone bothers your life a lot, it helps to cut them off if it is possible. If nothing else, you feel better and that is the way to better things ahead....!So dont worry Sharmin and things will only get better I am sure!
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Family...Alhumdulillah I am extremely lucky in this respect. Your immediate family is usually always there to support you but my extended family also has always given me a lot of support and love. When Hassan was diagnosed I was not ready to talk to anyone other than my mom. Every time dad or siblings tried to talk to me I couldn't speak as I felt choked with tears. Other than hmm I couldn't say anything. Everyday we would get innumerable calls from aunts, uncles, cousins and the first thing they would ask my husband was how I was and how I was dealing. With time I learnt endurance and patience and these relatives of mine were actually more worried for me rather than Hassan. Even now when I am all positive regarding my sons future they tell me ...thals nowadays get married , have children, they live a normal life.Have patience and keep faith and Inshallah everything will be the way you want it. This time when I was in India Hassan was playing with his cousins on a swing. The boys were older than Hassan and they were swinging very fast and each time I would go and tell them to swing a little slow. After a couple of times my aunt came and told me to leave them alone and let them play. If Hassan was destined to get hurt he would get hurt irrespective of any protection I could give him. Don't be so protective or possessive. Thats my family.
As for friends, like Zaini said its we who choose them and I choose what they should know and how much. But if any of my family members should talk crap on my face and fail to understand then I would probably maintain a little distance from them.
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Only the wearer knows where the shoe pinches.
Sometimes 'friends', 'family', even doctors, etc, get a dose of what our shoes feel like, albeit at a milder level. That is the first stone in the empathy foundation.
:happyyes
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I dont understand why they keep talking about marriage!!!! its not like their getting married its a choice that a thal has to make just like any other person!!!!! sriously I was upset when my mum wanted to force me to marry a family member and didnt agree on a guy who proposed just because she thought what would his family say? that day i couldnt rest i started thinking what could be wrong with me?! maybe shes right!!! but then I spoke to grandpa and he told me no one is perfect you have to standup and learn how to say No so I did :> make the right choice people even if ur stuck with famiy that doent understand u be stronger by who u r !
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MaryoOm has started an interesting topic within this one...marriage is such a complex issue...no matter who it has to do with!...lots can be written about it....!
Right guys?
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MaryoOm has started an interesting topic within this one...marriage is such a complex issue...no matter who it has to do with!...lots can be written about it....!
Right guys?
Yeah,and mostly in eastern countries.
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Thank you for all of your responses :hugfriend :hugfriend I agree, I also have some friends and family who have been supportive beyond belief - more than I can wish for. This group is such a blessing, the friends I have made here understand me and the issues I have faced - and these friendships are such an enormous part of my life. I have immediate and extended family that I can rely on - as well as all of you.
I have however faced pressure from certain relatives on an ongoing basis over the years. Wanting to please them and to nurture my family's relationship with them I have worked tirelessly to keep them content. My son has numerous appointments to deal with his thalassemia and autoimmune hemolytic anemia - to balance this we have ensured that he is involved in numerous activities such as hockey, music and that he has a very balanced home life. We make efforts to enrich his education and remains caught up at school despite missing many classes. While doing this we have to make extra efforts to give attention to our other child so that she is not affected by her brother's illness and lacking attention. After attending to all of this, I have taken my remaining time to ensure that we attend to the needs of these family members and that they spend adequate time with my children. Very very unfortunately, they have never found this time and my efforts to be enough. Instead they have verbally abused me and spread terrible rumors about me throughout the community for years - fully knowing the difficult situation that I am in.
As a mom who deals with her child's blood disorder - the complication (antibodies) that have arisen from it - as well as the normal pressures of life - 2 weeks ago - after the latest incident I felt like I could never again listen to such garbage again. I felt like it was time to break this cycle of abuse. I felt like it was the last time I would listen to the yelling, scolding, the accusations and complete lack of appreciation for the time and efforts I have given.
Only a family with thalassemia - thalassemia that requires multiple days of treatment each month - and much maintenance each day for survival - knows the value time has for us - for someone to take this valuable time from us - only to claim that it wasn't enough and that it was meaningless - offends us and hurts us to no end.
You all are so right, people can say they understand - they can even hear us talk about our experiences - but after a while they get tired of hearing about it. They chalk it up to being a big excuse and never change their expectations of us.
Thank you all again for sharing your experiences. I hope that we can all learn and become stronger each day. Healing from the emotional scars is a work in progress :)
Much love to you all,
Sharmin
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Sharmin, it's only since I became a mother that I have truly begun to understand how hard it was for my parents. I really feel for you, and hope you can find some peace with your family troubles. It appears that they have, and continue to behave appallingly when you so clearly are doing an excellent job coping with the struggles of life and thalassaemia. Keep strong x
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Thank you Zedzed:) It's a pleasure to have you here :hugfriend We have so much to learn from you. I am so happy to hear that you are a mother.
Sharmin
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My family is very supportive of me, but yet they can be verbally abusive in many different ways also. I hate being teased about my weight and the color of my eyes..(yellow). My mom is very over protective of me and it gets really annoying but i know that she is only looking out for me and she have been by myside dealing with this just as much as I am. :hugfriend My boyfriend is also very protective of me. I thought that I would NEVER find someone that was willing to stay by my side and help me cope with Thal, especially from where I live. I am very thankful for the people that are willing to stay by my side and keep me motivated. Thanks also for this website. For this short period of time that i have been on here I relate to many stories and they keep me inspired. :grouphug :grouphug
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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.
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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
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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.
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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?
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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.
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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?
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Hi everyone. I am new to this forum and I find your posts very helpful and heartwarming. :biggrin
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
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Hi everyone. I am new to this forum and I find your posts very helpful and heartwarming. :biggrin
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
Mary, Hi
Life is not very easy for a thal. Any time, any moment there might be complications requiring medical attention(not to forget the regular transfusion and chelation regime). You have to be mentally prepared and most important supportive.
I know coz I am a thal happily married to a non thal. We fell in loe and decided to marry. I was frank right at the outset.
Mind you, I was not on transfusion then Survived with a low HB of 5 gms and sometimes even less.
My transfusion regime started after mt marriage. So imagine it was expected yet unexpected. Took us by surprise. Splenectomy, portal vein thrombosis, back pain and now disc prolapse even. but he is always by my side, accompanying me to the doctor, taking me outside for special advise, to the hospital for transfusion etc etc.
As thals we recognise and feel guilty somewhere(I sometimes feel bad)...so we give in our best for our relationship to work. I am sure even the person in your life is going to do so.
But if you have the mental strength to support him, then surely its going to work out. Love is all conquering and with love and support towards one another, I am sure you can have a wonderful life.
lots of love
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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.
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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.
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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.