People Just Don't Understand / Pots And Babies

[imapumpkin]

I posted the other day about how I have been doing much better lately emotionally about working through having a chronic medical condition but I feel like I just got knocked back down several steps. I guess I spoke too soon.

So of course people who don't have/deal with illnesses like POTS and dysautonomia may have a hard time understanding it (i mean even the medical community and those of us with POTS don't fully understand it) but sometimes dealing with people who insist on being ignorant about the "disabled" community is frustrating to deal with.

Something happened yesterday that has been very upsetting to me. My boyfriend informed me that he mentioned to his mother that I would shortly be filing for disability (under the advice of my POTS specialist neurologist given that I lose my health insurance through my mother next fall). His mother then proceeded to wind herself up and then went off about how the fact that I will go on disability means "She's never going to be able to have children." I guess she got very worked up about how I'm not going to have the energy for babies and essentially implied that I was not a good potential daughter-in-law if I cannot give her son children. To add insult to injury, this discussion was in front of their whole family out at a fancy restaurant celebrating his sisters birthday.

I am very hurt by this for many reasons. First, I feel it's totally inappropriate to discuss my potential mommyhood over dinner without me present to defend myself. Second, because she seems to have made up her mind that I am damaged goods since she apparently associates SS disability with being handicapped which I think is completely unfair. I am only 25, I have been doing better with my POTS since my heart surgery and having good results with being on metoprolol for my HR. Furthermore my neurologist has told me my dysautonomia is on the mild end of the spectrum, she doesn't expect my POTS to last forever and if I do deal with it my whole life it won't be constant issue, only occasional flare ups. My boyfriend tried to explain all this to her but she just dug her heels in and is now convinced this is a serious concern since in her mind, I won't be giving her any grandchildren.

This also hurts me because I definitely 100% want to have a family someday. I have known I wanted to one day have children since I got my first baby doll as a young child myself. This has been a concern of mine throughout my whole health issue journey and I have been cognizant about asking every doctor along the way how things will affect my ability to have children. So far, not a single doctor has said to me "You will not have children because of this". In fact, my cardiologist has on more than occasion reassured me that it is safe to have babies. Furthermore, one of my heart surgeon's main concerns going into my surgery was making sure I would be able to have children by assuring me if my mitral valve needed replacing if they couldnt repair it, he would use a bioprosthestic valve rather than a mechanical one so that I wouldnt have to be on warfarin because warfarin is unsafe for pregnant women.

My boyfriend and I have been together going on 4 years. We are in a loving and committed relationship and have had many discussions of a future and family together. He believes we can do it. I believe we can do it. Neither of us are ready to get married yet so this isn't a pressing issue, and who knows how I will be feeling when it becomes one? I could be feeling much better . I could be doing very well. I could be off disability by then. No one knows. I feel really marginalized by my bf's mother that my only value to her son is whether or not I can have babies, which I WANT to do. People on this forum have had babies after a POTS diagnosis. I'm not saying it's easy but after POTS I'm really not expecting anything to come easy from now on. I just don't know how to handle someone just not understanding my situation and making it seem like I'm responsible for my medical condition.

[looneymom]

Sounds like you have found someone pretty special. Take care of this relationship and concentrate on whats best for you as a couple.

[Mytwogirlsrox]

Welcome to having a mother in law! Lol! Sorry I just had a in-law conversation recently, mines a hag too! Best thing to do is ignore her, it's not about her, whether or not y'all have kids! Don't let it bother you, it's silly, and there will be many more instances of mother in law sticking her nose where it doesn't belong! Chin up, sounds like your headed in the right direction.. Don't let her silliness slow you down!

[HopeSprings]

It must be something about the word "disabled." Ugh, I just recently had a conversation with a very close family member and told them about my upcoming hearing for SSDI. I was expecting to hear something like, "good luck, hope you get it." Nope. I got a pause and then.. "are you sure want to do that, why would you want to be labeled disabled?" And who are we worried about labeling me exactly? I had to say let's face it, I am disabled, I don't like it either, but that's reality. I guess the word conjurs up all sorts of images at the extreme end of the sprectrum? - I don't know. Anyway, POTS shouldn't keep you from having the family you've dreamed of. Yes, it's difficult, but if you have support - it's do-able. You described your feelings so eloquently in this post. Maybe you can talk to/educate her?

[MomtoGiuliana]

The drive to have children (and grandchildren) can be a powerful biological drive. It’s natural I would say for her to have these desires therefore. However, it’s terribly immature, that she expressed these feelings publicly and off the cuff, did not seek to better understand the situation or express concern for you—and did not acknowledge the beautiful committed relationship that you have as having any value. Loving parents want more than anything else for their children to be happy and healthy, not for their children to do things that the parent wants—whether it is a certain career or producing children. Unfortunately this sort of pressure occurs all too often. Sadly she will bring a great deal of unnecessary suffering into her own life by being focused on controlling things that are not hers to control. I’m sorry you have to deal with this. Like someone else said I would focus on your relationship, and try not to worry about what she wants. It’s not her life to live and doesn’t matter what she wants!

[icesktr189]

I am 23 and on SSDI and have 1 child who is 3 I plan on having more in the future if I see improvement in my POTS ( I am not ready any day soon though! ) You never know what the future will hold!

[Ash]

I am so sorry you have to go through this pumpkin! Sounds like your mother in law and mine have been talking...they are sooo much fun ; ) unfortunately I heard this same thing a few weeks ago, only it got brought up my my husbands grandmother (the only family member who asks me about my condition) she kept saying "we'll I heard it is unsafe for you to have kids" " I don't think you can have them" etc...I informed her that yes until December my cardiologist and OBGYN wanted me to wait to start trying until they could figure out my symptoms and how to help them, but that I have there blessing to start trying now. In fact my cardiologist is hoping that pregnancy will help me feel better as it increases blood volume, and the only precaution is that I will have to see him more and he wants to be in close contact with my OBGYN. The only thing he is concerned about right now with having a baby is postpartum and that I will most likely crash around the 6 week mark, so just be prepared and have help lined up. But in his words " you already know what exhaustion feels like, and how to deal with horrible symptoms, so you have to decided if you want to put your life on hold or fight through it to enjoy it" oh and that I should be better prepared since I am not going from lots of energy to none like most momma's and already know how to "function" on no sleep when I asked her where she heard this she said my mother in law told her " they better not be trying for kids she needs to figure her own stuff out first" okay my MIL has never once even when I was in the hospital for 13 days asked me about my health, I don't even know if she knows what I am diagnosed with! Sorry ranting. Lol. But this is also the women who six months ago told me " that she is too young to be a grandma, so we need to hold off on having babies" it is amazing what we put up with because we love their sons

[khaarina]

If it wasn't your illness it would be something else. That's mother in laws for you. I speak from experience, unfortunately.

[shannon]

So sorry to hear that your boyfriend's mom responded that way. It hurts when people make assumptions about what you can or can't do, or place value judgements on you like that. I'm glad your boyfriend is more supportive! It sounds like the two of you have a good thing.

[imapumpkin]

Thanks for all the responses! It's hard enough dealing with POTS itself let alone dealing with ignorant and judgmental people, particularly when you think that the person should be understanding and supportive. I am thankful that my boyfriend is supportive, understanding and not putting up with his mom's ridiculous behavior.

Naomi- You're right; disabled doesn't mean what people assume it means- incapacitated forever. It doesn't have anything to do with being labeled, it's a financial decision so that we can have fiscal support, not a way to label us as invalids. I would really like to sit down and explain my situation to her but she is terribly stubborn. She has apparently googled POTS and made certain assumptions about what she has read but doesn't necessarily know my situation, nor does she care much to understand as all protests by my boyfriend have gone ignored. It is also doubly difficult because my boyfriend and I are long distance..he lives 2 hours away so I have been unable to drive there and visit since my flare up. My boyfriend has been wonderful enough to do the driving to come visit me, but it means I haven't seen her in person in quite some time so I can't sit down with her and discuss things like grownups, and she also can't see how much better I've been doing since my surgery.

Ash- You make lots of good points and it makes me feel optimistic and like I have a load of good information to back me up .And I'm sorry you also have a MIL who isn't supportive or understanding. I asked my bf if he thought his mother would be understanding if I told her about all the people on the forum who have successfully had children or have been told positive things like your doctor has told you. I was joking. He said "Probably". I don't know that explaining anything will be helpful. There's no pleasing some people, particularly mother's of boyfriends.

Dani- more good news! question-- did you have your child before or after your POTS diagnoses?

[Angela]

all i have to say on this is relationships are hard as it is. relationships with illness is even harder. relationships with illness and child/children involved....no words for that. but i wouldn't give up my son for anything. i just don't want my son to get this sucky pots. or autism...or whatever connection there is.

[Angela]

well, don't think he will develop autism, my line of thought is that there seems to be a connection for a lot of potsies. and all our children are beautiful the way they are, but life isn't easy either way. hope I am understood correctly.

[imapumpkin]

**UPDATE**

So, here we are, a year later. I would say that with the exception of some non-POTS related health issues, I'm doing pretty well. Still fatigue, but not nearly as bad. Not brain-fogged (but it's not summer yet so we'll see how that goes). My blood pressure has been doing beautifully and my capacity to do activities has definitely increased as the months go by.

So, all and all, can't really complain.

Until tonight when my boyfriend informed me that his mother had, yet again, made an inquiry about my ability to have/take care of babies in the future and that she has been wanting to ask me about it, but doesn't know how to bring it up.

I swear. if this woman doesn't help increase my blood pressure, I don't know what will.

In her mind, the fact that I am currently unable to work is very concerning since having a baby (or babies) is like having a full time job. I am aware that the physical/mental/emotional toll of having a newborn, or toddler, or child in general is very high. I have no delusions that having children is not hard work, probably the hardest there is. In fact I know this about being a parent and I want to eventually be one anyway, which I would venture to guess, is how most people feel about becoming a parent. The fact that I have POTS and currently cannot work is an obstacle. But I am up to the challenge. I have always want children. I very much want to have a family and certainly plan to start one in the future. We don't know where I will be healthwise once my boyfriend and I decided to start a family. My hope is that things will have vastly improved. Regardless, having babies is something that I certainly plan to do in the future. The fact that my boyfriend's mother is still asking these things and still placing my value on my ability to give her grandchildren rather than the fact that I'm in a happy loving relationship with her son is very STILL very upsetting to me. Keep in mind that I have been in a relationship with her son for 4 and a half years. She thinks that because she had five children she is the authority on all things parenting. I have told my boyfriend to explain to her: I have always wanted to have children. I plan on having children in the future. As far as I know, there is no medical reason that will prevent this from happening.

The end.

I refrained from adding a "and also mind your own business, this is a totally inappropriate thing for you to be asking me."

(oh, and just as a cherry on top of the sundae, all this bologna came immediately following her making a snotty comment about the fact that when my boyfriend visits me--we are long distance and we both still live at home with our parents, myself because of POTS and him because of crushing student debt--he sleeps in my bed. I believe her exact words were "And her mother puts up with that crap?" and then made a snarky comment about how I'm going to get pregnant because we share a bed when he visits. It's been 4 and a half years. I'm very diligent about using protection. And there isn't hanky-panky going on every single second. And I'm a grown woman. So there's that. But to snark about how I'm going to get pregnant because of the premarital relationships immediately proceeding her being oh so concerned with my childbearing and rearing abilities baffles me. i am THE MOST BAFFLED.)

My boyfriend has spoken to her about this before. He does stand up for me. The last time she pulled this malarky he yelled at her and then he didn't speak to her for a week. He knows exactly how difficult and inappropriate she is so he is not phased by stuff like this so he doesn't necessarily get why I become so upset upon hearing about her latest judgement of me.

Why do people feel they can make comments about other people's reproductive plans?

[corina]

Your boyfriend seems a gem, I think you best try to focus on him and your relation ship. I don't have an answer for you other than asking them that exact same question: "why do you feel you can make comments about other people's reproductive plans?"

[Hearts]

As a mother myself who has had dysautonomia/POTS nearly all my life (though diagnosed after having my children), I can tell you that it IS doable and you WILL be a mom someday. There is an internal drive that switches on inside a mother when she has a child that makes nearly anything possible. We poties already are great at pushing ourselves to do things but when it comes to taking care of your children you will be amazed at what you can push yourself to do. When you do have children you will be able to do more than you imagine. You will learn to push more when needed and rest when possible. If I did it, you can do it, and your children will be a custom to your activity levels. It really does work out. As far as your MIL goes, just be ready to prove her wrong. That will be better than any words you could say to her. You do have a wonderful man if he stands by your side instead of his mothers during times like this. You will both make wonderful parents!

Hearts

[imapumpkin]

thank you, Hearts =) always good to hear

[blueskies]

I am a mother-in-law. I have a daughter in law, and a son in law. And one child is still to get married which I hope he does because HE wants a family. If he didn't want a family I'd be fine with that. It's ultimately about the happiness of my children. I would never presume to speak like that about my daughter in law. or any of my inlaws for that matter. It's not in me. But I have also bought my children up to be loyal, first, to their partner in life. What my daughter in law does is her own business. Actually I like her. She's good for my son and he's good for her. If she had decided to have no children I would have been fine with that. But they do have 2 beautiful boys who I'm totally in love with and it's all good. On a lighter level: She's a really bad housekeeper and I love that, because I was too uptight about having a clean house when my kids were little.

It's not about the 'mother-in-law' it's about the person that the mother in law is. She sounds like she's ignorant and doesn't know how to mind her own business.

When I come up against critical people that have no right to stick their nose into my business or if I hear someone has said something negative about me, "like she's always sick' (meant in a critical nasty way) I remind myself of the old maxim 'that when you judge someone you are saying nothing about them but rather defining who you are.' Your mother in law has seemed to pretty much defined herself as being ignorant, rude, and a person who concerns themselves with things that are none of her business.' Try to let it go. I know it's hard to do when you are sick and tired and worried and feel vulnerable. But the only person she's making look bad is herself. She will only have power if you give it to her. I don't always remember to apply that maxim (sometimes I feel hurt and wallow in it a bit, LOL) but I try.

I struggled a lot with my mother in law for quite a few years in the beginning. But I learned to let my mother in laws criticisms wash over me, leaving me untouched. I did not complain to my husband about her. But just got on with being the best wife, mother and person I could be. Strangely enough, my mother in law and I ended up to be quite fond of each other. She was never became a real, true, deep friend but we used to laugh about stuff and spend time together enjoying ourselves. The real test came when she was homeless at one stage and came to live with my hubby and myself and our kids and she was so easy to live with - we were respectful of one another and looking back I can see how living in her daughter in laws home must have been difficult. I was too young to realize at the time how difficult it must have been for her. Time makes a difference to some people. She mellowed. Funny how things can turn out.

My daughter has ended up with a very nice mother in law but a really difficult father in law who is always finding little faults with her. Doesn't like me either. Not one bit. Does not try to understand me or my husband. He looks down on us for not having much money. I could give a rat's behind. LOL. And my daughter is learning that it's all his problem. She knows she can't change him so she tunes him out. Most of the time. It takes practice.

blue

[midatlanticdinetuser]

So...I want to address some of the things in this thread...But I am really worried about being misunderstood or offending anyone...I hope that what I say will be received in the spirit of just me sharing my own experiences... And not as me making any judgments or implications for anyone else...I would never try to discourage any woman from motherhood. It has given meaning to my life in my most desperate times, the way nothing else ever could.

But it is also the most physically and emotionally draining and exhausting thing that has ever happened to my body, directly causing me extreme harm, in financial, emotional, intellectual and physical ways, which I cannot overemphasize to anyone with chronic health issues. Pregnancy itself was so hard the first time, that I swore I would never do it again. Then I ended up remarried to a man with no kids who wanted them, and the second pregnancy was 100 times harder.

Marriage and in laws and parenting are difficult in the best of circumstances.

25 years old, long distance, the word disability, and living at home with parents (and questionable boundaries about appropriate topics for family dinner conversation when you are not present), are all red flags for why I am glad to hear that you and your fiance are taking your time to prepare for marriage.

However, I must also say, that the longer you wait, the more difficult pregnancy could be on your body, and the less energy you may have to parent an active toddler without family support.

Family support will be very important when you have babies. Including in law support. We live far away from family, and my husband has to take a sick day to watch the baby when i have complex doctor appointments. I struggle with my mother in law but I could really use help.

Try to see this from the mother in law's perspective. She doesn't want to see any of her kids struggling or stressed. The word disability is terrifying to a parent. My husband is taking all this very hard. I wasn't actively "sick" when we met and married. He needs time to process this, for example, yesterday I raised the idea of getting a handicapped tag for the car. He completely freaked out. Your mother in law needs time. And your fiance needs to stop raising the subject of your health status at family dinners when you're not there.

Also. Please look into the genetics of how well your methylation pathways function before trying to conceive. I don't want to give formal advice, but my oldest is on the spectrum and I recently learned I have methylation mutations. Cerebral folate deficiency has been in the news just this week. I believe the connection is real.

I wish you strength and positivity and a healthy marriage and healthy babies. You can absolutely handle it, with preparation, determination, and a huge amount of family support!