Relationships in thalassemia

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

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?   

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.

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 who are always there for Z whenever she needs you.

So don't worry my friend,you'll be better off with out them  .

Zaini.

  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....
  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!

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.

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.

 

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?

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.

Thank you for all of your responses    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

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

Thank you Zedzed:)  It's a pleasure to have you here    We have so much to learn from you.  I am so happy to hear that you are a mother.

Sharmin

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.  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.