Fears around pregnancy & having a newborn due to chronic illness and pain

[nuresearcher]

Hi all,

Does anyone else worry they won’t successfully manage their pregnancy and then a newborn while dealing with a chronic illness and/or chronic pain?

I have a few conditions including, hypermobility spectrum disorder and a functional gut disorder which affect/limit my daily functioning.

I am doing all I can to manage and improve my health, for example, I see a Physio and regularly do exercises to strengthen my body (this is a slow process but I am motivated). I still worry I will struggle with the fatigue and extra responsibility of a pregnancy and then motherhood. My partner is wonderful and says he will support me & our future child. Ultimately he knows what he is in for & wants to have a family with me regardless of my barriers. Some days I am so excited and hopeful for the future and other days worry l’ll be letting my partner and future child down because of my limitations. I sometimes worry I won’t be enough. Does anyone else feel this way? How do you manage these thoughts? What are you doing to prepare for pregnancy? Thanks

 

[rightway2truth]

@nuresearcher I have chronic pain and definitely worry about this. I’m trying to keep up with my exercises and plan to try to strategize when picking nursery furniture (ex: a changing table at a good height so that I have a place to change baby where I’m not bending over awkwardly).

 

[nuresearcher]

@rightway2truth Hey, thanks for commenting.
Good on you & that sounds like a great plan. I’m going to invest in some good wraps so I don’t have to use my arms to carry the baby all the time (my arms are not very strong and tire easily).

 

[rightway2truth]

@nuresearcher Ah that’s a good idea too!

 

[nuresearcher]

@rightway2truth Thank you! Im hoping it will help!

 

[radiantfaith24]

@nuresearcher I’m in a similar boat but my hyper mobility doesn’t affect my daily functioning as much as my separate auto immune issues/flares do, are you considering undergoing genetic testing? I have a lot of guilt surrounding possibly passing on ailments such as the chronic fatigue, hyper mobility, and related issues to my children. Genetic testing seems to be promising, however, as you mention the physical toll seems daunting. You’re not alone

 

[nuresearcher]

@radiantfaith24 Hi, thanks for your comment.
Sorry to hear you have health issues too- the physical toll is super worrying hey.
Yes, I did the comprehensive genetic screening and I should receive the results in about a month. If they’re hypermobile (which is likely) I plan on helping them to accomodate/ strengthen their bodies from a young age etc.

 

[racheljay50]

@nuresearcher Grad.

I was actually diagnosed with an autoimmune disease during my preconception appointment. I had to see a specialist after and had a lot of health issues right before we were going to try, pushing our timeline back. I started therapy during this time because I wasn't sure I should have a child if they were to inherit my illness. I was diagnosed with crohns disease and found out I had tuberculosis at the same time. I would have to be on medication for the rest of my life, including during pregnancy and breastfeeding.

It took a lot to get through it. I felt like I was ruining everything for my husband. That I was destroying his future, tying him down to me and my issues. That I would be causing problems. He knocked some sense into me (the therapist, too), asking why I thought so little of him. Why I thought this would change things for him. It took months, but I finally got back to wanting kids.

I had a lot of conversations with my husband about if I go into a flare, what that means for parenting. I have an awesome village around me, luckily, who are willing and able to step up.

I have been very lucky. I went into remission and was deemed healthy enough for pregnancy. My son is 20 months old now, and everything has been fine. We learned to adapt. I haven't been in a flare yet (thank god), but eventually, it will come. And we will all deal with it when it does.

Being limited doesn't mean being unable to help. It just means that the help you give will look different.

 

[nuresearcher]

@racheljay50 I really appreciate you sharing your story and providing some perspective.
I’m glad to hear you have such a good support network!
My flare ups are semi-regular and I feel useless when they occur. I need to rest and can’t do too much otherwise my symptoms get worse. I’m also lucky that my family are keen to support me, I’ll have to keep working through those feelings of being a burden.

 

[racheljay50]

@nuresearcher Yes, that feeling was really eough for me as well. It can be tough to accept support, but you would be okay helping someone who needed it without judgement. Remember to offer yourself the same grace.

 

[nuresearcher]

@racheljay50 That’s important to highlight, I would be ok with helping someone who needed support. Thank you again!