I was really hesitant about writing this story here because I didn't wanna depress anyone and also because the only two posts I have posted here weren't really that motivational. They were mostly about how my meds are not working so to anyone who is not in a good place right now please don't ready this story.
So I have been diagnosed with ET (CalR) about 3 years ago shortly after I graduated from college. During this phase I was in a start of a wonderful relationship with the man I can safely call now the love of my life. He was very supportive and loving all the time I was struggling with the exessive fatigue and the frustration from the side effects or from the meds not working. Also, during these 3 years I started a good job that is suitable for me and was really successful at it and managed to not let ET interfere with it for the most part. The most hard part was me gaining a lot of weight that I can't lose till now because I have anemia so any training makes me kind of weak and dizzy and it has been hard to go on a diet and also, I am kind of lazy.
About a couple of months ago my boyfriend and I wanted to get married and we are both Egyptians who live in Egypt and the tradition here is that the only way we can be together and live together is through marriage and the process of marriage heavily involves our families and we must get their approval and support to be able to take this step. My boyfriend's father has always been critical of me even though he only met me once and doesn't really know anything about me. When we decided that he will finally tell him that he wants to marry me he firmly said no and he listed his reasons which were that am to ugly and fat that he can't stand to look at me or be seen in public with me (he said those exact words), I am the same age as him and finally that I am ill and I will make his life miserable being always sick in the future and drag him around in hospitals and I won't be able to have children.
He is having a hard time convincing him that it's his own life he should marry the one suitable for him not his father and it's been hell for both of us going through all of this abuse from him. When he finally agreed to negotiate he said that he will forget the first 2 reasons but he can't with the third one and that we have to prove to him that am totally healthy and cured not managed and if there's a 1% chance that I will get seriously ill in the future he is out and of course we can't give him that because there is no cure for MPN.
The cherry on top was that his father told him a couple of days ago that he asked a doctor about my condition and told him there is a chance she will develop leukemia in the future and now he doesn't want to argue anymore and gave his final no.
I can barely leave the bed right now. I cry all the time and I am distracted at work and it feels like my life is falling apart knowing that I will lose the one I love the most because a condition I have no control over and didn't ask for and life feels really unfair right now.
Sorry for the depressing long post. I really needed to share it since I can't talk about all of this with my family but I saved some good news for last; my condition actually is kind of stable right now and my platlets went down to 596 and my Hemoglobin up to 10.
All the love to everyone.
Written by
Wadz
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Dear Wadz. I’m sorry to hear this. We are all here for you on the forum. It is awful that you have been treated this way and you do not deserve it whether well or ill. Be strong. There are plenty of good people out there who will not let your illness get in the way. It sounds like your partner was put under a lot of pressure by his family. He may come round but the important thing is for you to take care of yourself first and foremost. Take care. Jacquie x
I am so sorry to read this, and don't feel hesitant posting, if we all posted positive only things it would not be a true reflection of the challenges we all go through.
I have no words of wisdom, it sounds a truly horrible situation, its amazing in 2020 that there are people with such views, it is really sad.
If you were from the UK my advice would probably be elope, but I appreciate that there are cultural differences, and its testament to you that you want to be true to your traditions in the circumstances.
I do hope everything works out for you, but don't feel bad for having a cry, it sounds like its with reason.
Thank you for your kind words. We both wish it was easier for us but here it's very hard for us to start our life without their support. This tradition was about having strong family bonds but sadly he is using it in the worst possible way..
Hello Wadz, I am so sorry to read this, it is a very difficult situation for you and your boyfriend to be in, it is very brave of you to share this with us all. I hope that you can resolve this with your boyfriend's father, might it help if you ask your own haematologist to perhaps provide some information about you and your MPN and prognosis, to say that you are stable etc, it might help. Kind regards, Maz
Hi Wadz so sorry to hear what has happened. I think follow Maz's advice and show your partner the correct info about your condition. If your partner is strong he will make the right decision. Your partner's father had no right asking about your condition behind your back.
I know it's really hard just now but you will come out stronger and the better person for it. If your partner wont learn the truth about your illness, then stand up to his father, he is not worth it! Trust me (from experience) I know what in laws can do interfering in your life with your partner and unless he is willing to stand up to them now, you will have continual problems with them.
Never feel you shouldn't post, that's why we are all here, to support one another. Kindest regards Aime xx😻😻
Thank you dear for the support. He already educated himself well about my condition since I was diagnosed but his father doesnt want to believe him so we decided we will have a talk with my hematologist and see what will happen.
So sorry to hear about your situation. I know it feels like the end of the world right now, but you’re young and perhaps this man was not the right one for you, anyway. Perhaps it’s best for you to concentrate on your health right now and day by day, you will start to feel better physically and emotionally. There is somebody out there for you. Do not give up hope. We are all here for you to vent, if you need us.
So sad for you. Your post helped me understand you angst and reminded me of situations that even many very healthy people go through. No one can predict the future for anybody. We are here for you-I am grateful for so many of the kind compassionate people on this website who help each other everyday.
I am so sorry for your terrible situation. I hope that your haematologist can give you information that will help to convince your partners father that he is being totally unreasonable and cruel to both his son and you. Sending you love and best wishes.
Am so sorry to read your story what a horrible situation for you- hopefully it will be happily resolved but in the meantime please look after yourself best you can
Oh you poor lady to have this happen to you and your partner. Custom and tradition can be so cruel. So hope your haematologist can give some kind of clarity for your partner's father and that he will realise how much his son loves you and relents. The father is not only breaking your heart but his son's as well. It may take time for the father to change his perspective if he can change at all. I hope you can both hang in there in the meantime. Maybe if the father sees his son's stoicism he will soften his views in the end. I do wish you well and hope things can change for you...
My heart hurts for you! I wish your boyfriend’s father could talk to me! My potential in-laws were not so happy about their son marrying me - I had ET (CALR) too. But over the last 27 years my husband and I have proven their fears wrong. We raised 3 daughters and weathered many health issues over the years but they’ve made us stronger. I don’t know him, but your boyfriend’s father sounds like a cruel man to say such hateful things about you. I pray his heart and opinion will change towards you but mostly I pray for YOU that you’ll not loose hope. You will find love and you won’t have to face the future alone. Hopefully your boyfriend will be the one beside you; but if it can’t be...there will be others. Here is a group of people from around the world offering our support; don’t be afraid to share your struggles - you’re not alone. ❤️
In some respects, we have some similar aspects to our MPN stories... And in others, not so... However, I can empathise on how heart-breaking your story is...
When I was first diagnosed (ET 2016), I had been studying full-time at University for 5.5 years... and I was two (2) days away from being Posted abroad to work in my new career... All of that changed of course...
As you'd be aware, studying can be very demanding, and often we spend a great deal of time with our heads deeply buried in books, journals and laptops... Teaching ourselves, (out of necessity), to be more sedentary etc... :-[
Initially, I too gained quite a few kilos, and grew quite depressed... I also lost at love...
However, eventually, I came to a place where I knew I had to take Taylor Swift's advice and "Shake it off"... eventually... I did just that!
Realising that few with ET or PV ever progress, (circa 10-15%), to MF and beyond...
I started by caring for myself again...
I commenced by better educating myself to all things MPN, (utilising those study techniques), I had been developing to better inform myself as to my MPN condition...
First, I commenced an anti-inflammatory diet, and then slowly started exercising in order to create a consistent fitness regime... After all, gaining weight is just a simple equation really of calories consumed versus calories burned, and it was a matter of simply applying that logic, and taking the required action to effect changes in my habits and lifestyle...
It was quite a tall order, and my progress was very slow at first, but I persevered... However, in my case, I did progress to MF but my diet and exercise regime have helped to reverse some of my bone marrow scarring, down from Grade 2 to Grade 1...
Today, I am circa 25kgs lighter than I used to be... I now cycle between 300-400kms pw, and while I still have waves of fatigue, anaemia, and a mess of a whole lot of other symptoms that are chronic... I just take it all a day at a time, and keep trying to work on the things that help me get up in the morning...
I decided to try to raise awareness about MPNs in Australia, where there is a perceived knowledge gap within the medical fraternity, and more generally...
With the help of the beautiful Maz of MPN Voice, I built an Australian Patient's FORUM website and started a MPN Fundraiser here in Sydney, and I constantly remind myself that I can do more... I like to inspire myself and others now knowing that we can all achieve so much more than we might once have thought possible...
Here's the website should you want to take a look...
What a beautiful inspiring story! thank you so much for sharing this steven. It felt really good reading and knowing that it all worked out okay eventually. Wishing you all the best.
Oh Wadz, am I allowed to express my true thoughts? I know that your culture is very different to ours.
Over here it’s very rare that we would express our views as forthright and rude as that. All the people we know would accept our child’s choice even if we did approve. We want our children to be happy.
You are damned if you do and damned if you don’t.
Sounds like your betrothed father is a nightmare to live with and know and that’s far far milder than I’d really like to say.
You are able to have children and carry on as normal. If your partner chooses someone else then what illness does fate have in store for her. Although I would wish her no ill.
Unfortunately prejudice, ignorance, cruelty and a perceived desire to protect ‘values’ of one sort or another, pervades all countries and cultures when it comes to matters of love and individual choices of (marriage) partners. (Anyone been watching The Crown lately?)
What's really sad is that that's not the actual purpose of all these traditions. They were intended to strengthen the bonds between families not to let parents control their sons/daughters but he is using them in a very bad way knwoing very well that he has the ability to destroy this relationship just because he doesn't like me.
Then maybe your betrothed needs to make him realise that he will lose his son. Are your parents supportive? I’ve visited Egypt I know that life can be hard.
Oh why are some people able to be so hateful and get away with it?
Your post indicates you stand by your culture and I respect that.
They are supportive now and they like my boyfriend but if they knew the whole truth I don't think they will agree that I will be part of a family with such hateful man so that's why we are trying to convince him before involving my parents plus if my BF decided to take the step without the support of his family this is considered as an insult to ours and I don't know how will they react to that.
I'm really sorry to hear that your boyfriends father is so anti, It's such a shame as who can say what the future holds for anyone in regards to health, could you talk with his father and say that while you are being managed you are lower risk, you can still have children (sorry assuming you can but mpn doesn't stop someone having children) and that should his son ever become so poorly that you have to look after him completely you will, that's what love is. That his son is fortunate to know about your condition from the start, that he knows what it involves, is involved. He could find someone else and still have similar things to deal with but they would come as a surprise later in life, all that's guaranteed is love and that's what you have. Maybe write him a letter if easier, saves arguments. My hubby has an MPN, we had been together years before diagnosis but had to fight to be together. Even now my mum says she's sad I have to deal with this, but he's the man I chose, the man I would always choose. We renewed our vows last year & they meant so much, ours include in sickness & in health - I shed a tear at that & said the words so strongly as that's what is a relationship. Fight for your love the same as you fight for your life. If it comes tobit could you do it without his consent? Wishing you the best of luck.
Thank you dear for your lovely words. I am happy to know that you and your husband are living happily together. wishing you all the best.
It will be hard to do this wihtout his consent because it is considered like an insult to the bride's family that his father is rejecting me and I don't think my family will accept that.
I am so sorry to hear of the difficult times you are having. To say his son cannot marry you because you might get ill in the future is tantamount to saying he cannot marry you because you might get run over by a bus! Research into MPNs is moving at a pace right now and who knows how much better life will be for us MPN sufferers in the future? I hope your future father in law takes the time to get properly educated about your condition and stops seeing the worst options. I wish you all the very best and hope that the two of you will be able to work through his father’s objections and look positively towards the future together. Xx
I'd say you don't need that toxic father in your life. Sounds like the Son can't make his own decisions but you can. Only let positive people and things in your life.
We discussed that a lot and we both agreed once we get what we need from him we will need to set boundries because he has proven how much hate he has for me for no reason just because I dnt look good in his prespective and because I have a condition.
Thank you for sharing your story. An immensely brave thing to do.
Overcoming ignorance and prejudice is a very tough challenge. And tough challenges need staunch supporters and a clearly thought out campaign. I do hope your boyfriend sticks by you. And I guess, his support will be a barometer of his love for you and his ability to be strong in the face of adversity over the years.
I completely understand your need and desire to be ‘within the family fold’ and not outside of it. Going to see your haematologist is a really good step. And perhaps others in the family will be prepared to come on board. I wish you every strength. Keep us posted.
Thank you for your support dear. My boyfriend and I actually talked with my hematologist yesterday and she is willing to talk with his father. He is currently trying to convince him to pay her a visit.
I have just read your story and am deeply moved by it, I am so sorry to hear this awful situation you are in and cannot fully understand why anyone can treat, or say such nasty thing, about another human being (& in particular a future in law, you neither need or deserve this kind of treatment, god knows it's hard enough living daily with ET let alone deal with people's ignorance!!!! I certainly never thought I'd have a condition such as this but mpnvoice has been absolutely marvelous, we are all here for you and keep your chin up.
Absolutely no problem Wadz and as others have said you have all support of the members on this wonderful site. Will be very interested to hear if all comes good with your "future" in laws..
I am very sorry to hear that. It really hurts being judged and defined by something you have no control over. Hope you both find your way through this and try talking with your hematologist. I felt way better after disucssing the issue with mine.
Hematologist said it will not reduce any single day from your life, but the issue is my gf’s parents and relatives don’t want her to marry a cancer patient
Sorry to read your situation, but there are many people who don’t understand MPN.
Some are naive, others scared some ignorant. Be positive and an understanding partner will always help you.
This forum is really good as it allows people to share there stories knowing what you are thinking and going through.
I was not going to post my little story Of what I went through but I also really struggled and I’m coming through it.
I’m of Mediterranean decent.
When I was diagnosed 2 years ago , our marriage was struggling, my wife of 23years and who I known for 25 years said to me ‘ I’m a woman with needs and I require intimacy, if I was not diagnosed with ET and had not been taking Medication she could have saved the marriage’ she filed for divorce stating other things.
I do not hate my ex nor do I want bad things for her , she was a person that could not live with someone with a condition such as what I had, as I had to wash my clothes separately and had separate plates to eat from... yes it was a bad and lonely time. She refused to speak to any experts and I could not change her mind.
I wish her all the best for the future and our interest is with our children.
My family, friends and work colleagues have been really supportive and I concentrate on my health and my two young teenage kids that I now see every 2 weeks.
I have since met someone who is loving caring, understands and helps me with my condition and I feel as one door closed another one opened up.
However bad things might seem there are people that love and care for you and will help and give advise. This is such a place.
Be positive, follow you gut feelings keep posting on how you are and the MPN family will help you in any way it can.
The first part of your stort broke my heart really I am sorry you had to go through this.. no one deserves that kind of treatment but I am very happy that things workd out after and am glad you have people who care for you in your life.
I too feel for you. In contrast to most answers, I am Greek (very traditional parents that brought old Greece to Canada and US with them. That’s where I was born, but grew up with old Greece at home and US of the 70s in front of my door.
I have known many such situations As yours in my family and in others. A friend was engaged to be married and a month before the wedding, her fiancés brother took his own life. The mother stopped the marriage for 5 years! The five years became 7 in order to accommodate her mourning - or her own feelings of guilt- (meanwhile my friend was 37 and was running out of time to get pregnant). A fierce situation. The huge family stood strong behind the mother. Terrible.
What many don’t understand in the modern west is that you DO marry the family. Usually it’s a good thing and you are supported and taken care of no matter what, no questions asked. In cases like yours, this Infrastructure may fail or backfire. Sad.
In cases, where Love and promises to keep each other for life have succeeded and eventually, the family came to terms with the new marriage bond, the partner with the unwilling family stood up like a hero or heroine and very maturely and solidly expressed their decision and the family had to accept that The couple must be prepared to live with the consequences. This couple got married on their own and they have a beautiful family. The mother will still be mourning on her death bed. They did not allow her to destroy their lives.
Another friend‘s father didn’t attend the wedding, cut off all contacts and didn’t attend the baptisms of both him grandchildren. Nevertheless, after years he learned to love his German daughter in-law above all others in the Family. Ha! People DO change! Even old ones. 🙂 Happy End.
It is really up to you both and if I were you, you and your love must know exactly what you want and make your decision. That requires strength as a couple and individually and no „convincing“ the father or family of anything. Obviously, he loves you and he loves his parents. He’s a good man. Take an example of Prince Harry and Megan. He is solid as a rock in his decision. Are you both prepared for that? Even in Egypt?
I married in 2001. Both families were ecstatic with joy! We thought we were both healthy, but he had testicular cancer just 2 months after the wedding. I got slammed by reality. Would I have married him if he had it before the wedding? Probably, but I don’t know. I was 36, he 39 and we both wanted kids. i never felt such a connection as I did to him! I didn’t tell my family. It would have only complicated our lives. I got through the whole ordeal without them. We did get one little girl and then he had cancer again. Now I have ET and he stands by me. We can get through anything. I actually believe we are happier, stronger and freer today than ever before.
12 years ago, I was fat, I probably have the same anemia as you do and ET CALR. We are almost sisters, so to say. I also have Hashimoto thyroiditis. I, like Steve above, dove into studying health and got into the autoimmune paleo diet immediately. I lost 20kg in 2 years, no more eczema, or incontinence, or bloating, no more depression, or fatty liver, brain fog, plaque on my teeth, no more crazy lymph nodes, no more colds or flu, etc. A real dream of a diet. my diagnosis was sept 2017, but I’ve had ET for 10 years now! ive also had 6 TIAs. None for over 1.5 years now. I now feel healthier at 54 as I did at 40. There is so much you can do!! look into Steve’s site (Sokrates) and read the information on his page. He’s got everything documented
also, I’m a believer in God. The bible says to take care of yourself first, then your immediate family and then if you still can, you can help others. God made you as you are. Take care of the temple He put you in. That’s where success in your emotional and physical health starts. BE the woman you were made to be and look toward your future, no matter what comes. Life isn't easy for anyone! Step 1: inform yourself. Knowledge is empowerment. Step 2: be proactive. Be proactive in your health, relationships and future.
Try to see you life over a long period of time. Enjoy, live every day fully, doing things that are valuable, including resting, meditating, dancing, cleaning, whatever makes you happy and healthy. Start with a good, healing diet with a dietician, who’ll move toward healing your gut and immune system. That is the foundation for a good life.
I really hope to have helped! there will be difficulties, but You have a lot of great things coming your way!! 🙂 Anag God Bless.
Sorry life seems hard but I don't understand why you can't elope, especially if you have good jobs? Life is hard enough without judgemental idiots like his father. So put yourself and your life and health first and be strong, find great feminist friends to talk to and make a decision to stop proving things to his father, unless your lives would end or be extremely hard without his support? Sickness and death is a part of life and you must make the most of the life given, even if others don't see that. Best Wishes.
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US Senator Joe Lieberman died from MF
Spleen embolisation gone wrong
ET young adult
