I Wish I Knew: Before Getting Pregnant

Before getting pregnant, I will admit that I was completely in the dark about a lot of details. I knew what went into getting pregnant, but I didn’t know anything beyond the basic mechanics and my personal expectations were limited to media portrayals of pregnant women.

Sperm and egg meet. Cells divide and grow. Skip the pregnancy test, first sign would be morning sickness. Strangers touching my belly and offering strange prophecies about the child inside. Nine months later my water breaks in the middle of a store. I’d barely make it to the hospital in time. Three pushes and the baby is out. Oh, and the pain was unimaginable.

That’s all there was to it.

As I said in Wednesday’s post, I had a lot to learn about the process and alter my preconceived notions. I read some books, blogs, and message boards about pregnancy but once I was pregnant there were still a lot of gaps in my knowledge. Even now, if I got pregnant again, I am sure I will learn something about the process that I didn’t even know was possible.

Part of the problem was I didn’t know what I didn’t know. What was important information for me to know ahead of time might be common knowledge for another person; and what I might be familiar with may be a gap in another person’s knowledge.

There were things I wish I knew before getting pregnant, but I wouldn’t have known how to ask for that information at the time.

What I Wish I Knew

Cultural stereotypes surrounding pregnancy happens for a reason: there are some universal commonalities about the experience. Most women will experience morning sickness, most women will experience extreme fatigue, most women will have strangers offer unsolicited advice, and most women will be over the pregnancy by month eight.

What get’s missed in these cultural stereotypes is that while there may be some commonalities, each woman’s experience will be unique to her and she will experience her pregnancy differently from the next person.

I wish I had known this ahead of time. I also wish I knew about some of the more minor details about pregnancy that I am sure other women have experienced. Obviously, there is no way to know every little detail about pregnancy that every woman has ever experienced, but I wish the message of “this is perfectly normal even if it doesn’t feel like it” had been driven home.

Note: I am not referring to things that may be medical complications. If something seems wrong always go to your medical professional immediately. I am referring to the minor day-to-day things, like passing a lot of gas or having bad heartburn.

Again, I blame my public school education for the gaps in knowledge, but I also blame a cultural aversion to talking about the finer points of pregnancy. I cannot change the school system, nor can I shift cultural attitudes, but I can write a post about what I wish I had known based off of my experience.

Many of these are unique to my own experience, so please do not take them as universal fact, but these are the things I wish I knew before getting pregnant:

  • It isn’t easy to get pregnant
  • The baby gets everything first, so if you are feeling fine, don’t stress that the baby isn’t getting enough nutrients
  • There’s a chance that you won’t look pregnant through much of the pregnancy (you’ll just look like you’ve gained weight), so people will look at you funny when you use the expectant mother spots in a parking lot
  • Additionally, because you won’t look pregnant for a long time, people won’t clamor to help you like they might with other pregnant women. Don’t get offended by this
  • You are not required to gain weight. In fact, you aren’t eating for two. You really are only eating for one (you) and a half (the baby)
  • For those with MS: pregnancy is addicting considering how good you may feel for the second and third trimesters
  • Regular sleep ends around month five or whenever the baby settles on your bladder. Waking up in the middle of the night will become a permanent issue (even after the baby is born)
  • Sciatic pain is a real thing when trying to sleep at night. You will have to shift a lot to find comfortable positions
  • Never stretch your legs in the middle of the night. No matter how tempting or good you think it will feel. You’ll only end in tears from the Charlie Horse pain and force your partner to massage the cramps out

Because pregnancy is both a universal and deeply unique experience, I didn’t want to restrict this post to my own experience. I reached out to some other mother’s to provide their own experiences and advice.

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Talking to others about MS

There comes a time to reveal a difficult diagnosis to those outside the immediate family.

This can be a stressful or liberating experience. Friends may have suspected all along or been completely surprised by the information shared with them.

Revealing your diagnosis is an intimate act because you are sharing something personal with a friend in the hopes they will be supportive.

Because we cannot control others’ reactions after such a revelation, waiting until you are ready to talk is extremely important for your emotional health.

When to Say Something

First of all: you do not owe an explanation for your health. If you choose to divulge your diagnosis, that is a decision only you can make. Do not let anyone else force the matter from you.

If someone is visibly unwell and been so for a while, it may be harder to keep diagnostic information from others, particularly if treatment starts. It may be a relief in telling others because there is finally some information to share, but don’t be surprised if holding onto that information a little longer is more important.

While there might be a temptation to tell people immediately after the diagnosis, waiting until the information is processed is best. It allows for better preparation both with reactions and questions. Knowing which friends can handle the information with care and sensitivity helps in deciding who gets what information first.

But there may be some friends, despite waiting until you are ready, that may scale back the friendship because they don’t know how to handle your diagnosis. This hurts, but being ready for it will help mitigate the pain versus being blindsided. I made this mistake a few times and each time I wish I had waited to reveal my diagnosis or not bothered at all.

Only you will know the right time to divulge information, there isn’t a magic number or “best by” date to tell others.

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Raising Awareness for Multiple Sclerosis

To kick the month off right, let’s have a brief discussion about Multiple Sclerosis. I talk a lot about having MS, but I haven’t provided information to why it’s such a troublesome disease.

Part of the reason is it has taken me until writing this post to acknowledge the down-and-dirty parts of MS. For the last five years, I have allowed myself a vague awareness of the disease itself, but never sat down and understood the particulars. I would research as far as I needed to, but rarely allow myself to dive deeper because it was too painful to acknowledge.

In fact, if we’ve ever had a conversation in person about my MS, I rarely use the word “disease” when discussing it. You’ll find it to be the same throughout the blog. I don’t like acknowledging that I have a disease. I prefer to use the term “condition” or “situation.”

I recognize that if I am ever to be truly successful in treating and managing my MS that I need to be fully aware of the risks, outcomes, and possibilities of the disease.

What is Multiple Sclerosis?

Multiple Sclerosis is an autoimmune disease that causes the demyelination of the central nervous system. These attacks will disrupt signals from one part of the body to another which are expressed in a variety of symptoms: fatigue, brain fog, weakness, speech difficulty, and more serious manifestations.

Because MS is autoimmune, it means that the body attacks and damages itself sometimes beyond repair. 

There are three different categories of MS a person will receive when getting their diagnosis (Clinically-Isolated Syndrome [CIS] is the fourth type):

  1. Relapse-Remitting (RRMS): symptoms appear randomly and can range in severity. Once treatment of the symptoms is complete, the patient will return to “normal,” though some symptoms may persist after the flare-up. The disease progresses slowly if at all. 85% of new diagnoses receive the RRMS classification.
  2. Primary-Progressive (PPMS): neurological functions worsen at the onset of symptoms though there are no distinct flare-up or periods of remission like with RRMS. 10-15% of new diagnoses receive PPMS classification.
  3. Secondary-Progressive (SPMS): Around 50% of RRMS patients will progress into SPMS within 10 years of their initial diagnosis (specifically those who do not treat their MS). This is a progressive worsening of symptoms and neurological functions over time.

Anyone can get MS. That’s the scary thing. But there are certain groups of people who are more prone to the diagnosis:

  • People between 20 – 50
  • People further away from the equator
  • Women are 2 – 3 times more likely to get an MS diagnosis
  • Parent or sibling diagnosed with MS (~1-3% chance)
  • People with low vitamin D levels
  • People who had mononucleosis or another virus linked to MS at one point in their life
  • Already diagnosed with one autoimmune disease

It is estimated that around 2.5 million people globally have the MS diagnosis.

Why Raise Awareness

As someone who has MS, it is extremely important for me to raise awareness for the disease. The more people know about it, the more funding will go towards finding better treatments and hopefully a cure. Unfortunately, there are a lot of misconceptions about MS and the very nature of the disease can be invisible which is why awareness is so important.

Busting misconceptions

  • Getting the MS diagnosis is not a death sentence. Fifty or so years ago, before anything was known about the disease or ways to help treat it, it may have been. But now that there are so many disease-modifying therapies out there and complementary treatments, it is easy to manage the disease and help slow its progression.
  • No one is the same. If you have MS it is not going to look like mine nor is it going to look like your friend’s cousin. Yours or your loved one’s experience with MS is going to be unique to you and that’s okay. Do not compare yourself to others.
  • Start that family if you want. If you are physically, financially, and emotionally capable, the decision to have a family should not be decided by the MS diagnosis. While there may be a genetic component to the disease, you are unlikely to pass the disease down to your children.
  • No, it is not spread through the blood. Unfortunately, many blood-related organizations are still very backward when it comes to their information about MS. The Red Cross recently opened it up so people with MS could donate blood, but local and smaller blood collection agencies may reject you if you disclose your diagnosis.My heart was broken when Jai’s cord blood donation was rejected based on my MS diagnosis. They claimed they would use it for MS research but I have no way of following up with them.

An Invisible Disability

MS is a disease that can external and internally manifest itself. People with mobility devices like canes or scooters, or have handicap allowances outwardly express their MS so outsiders can be more accommodating.

But there is a whole group where all the manifestations of the disease are internal: no devices, handicap provisions, or a way for outsiders to see that we have MS.

This is what makes it an invisible disability.

Just like people with mobility devices, allowances may still need to be made for us, i.e. opportunities to rest, take extra time to work on a project, or need a few days off to treat a flare-up, but getting those allowances can be met with resistance.

My one negative experience was weeks before my actual diagnosis. I just got out of the hospital from a 5-day round of intravenous steroids to treat my optic neuritis and was in a grocery store with my mother. I was extremely weak from the steroids, lack of sleep, and overwhelmed emotionally from the experience when I slowly rounded a corner with my cart (I needed it as a means of support) and an older man started cussing me out when I got in his way.

He was telling me that I needed to give way to him (I actually had the right of way in grocery store etiquette) due to his age and I needed to move quicker. I tried to explain that I was too weak but he moved my cart while I was holding it, cussed me out, and flipped me off as he walked away.

It was a humiliating experience. And I have been fortunate not to experience anything like it again.

How to Raise Awareness

The rest of this week will detail ways to raise awareness based on your abilities. Wednesday’s post will be about events and opportunities to participate in MS activism and the community. Friday’s post will be about ways to start or participate in fundraising opportunities.

I provided some simple banners you could use on your social media accounts to help raise awareness this month for MS. Please feel free to download them for personal use.

Will there be a Cure?

At this point in time, there is no cure. But there is a lot of positive research coming out around the world about possible treatments and steps closer to a cure. From Cambridge University alone:

There are plenty of drug therapies out there that help minimize the impact of flare-ups and the progression of the disease, but we still have a long way to go before getting rid of MS and reversing its damage altogether. By raising awareness we can help keep the research momentum going and hopefully see it disappear in our lifetime.

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