Saturday, December 17, 2016

What I really want people to understand about infertility

When people ask, I try my best to explain the process of IVF, what it entails, the behind the scenes stuff and the emotions that are pretty common for most of us unlucky enough to be experiencing it.  Too often I keep it simple for the sake of the person having to listen, but also for my sanity.  Sometimes when people ask me a question, I want so badly to get them to REALLY understand what is going on and how I feel. Often people just ask to be polite, not really wanting to know.  I'm also afraid they couldn't handle the truth and that it would be too hard for me choke it out.  If people would really want to know and I had enough time and words to explain it, this is what I would really want people to know:

1)  No one going through IVF needs advice.  We understand sometimes people want to fix things for us or just don't know what else to say.  I get's an uncomfortable topic.  But if it's uncomfortable for you, imagine how I feel?  As far as advice goes: trust me, we are paying alot of money to have the best professionals fix it for us.  We've spent HOURS reading every bit of information we can get our hands on and I can guarantee you have tried it all.  When you long for something badly enough, you'll do anything and do your research.  Just because something you heard worked for your friend's cousin's neighbor doesn't mean it'll work to us.  People are different, have different issues and respond to treatment differently.  If there was a magical cure for infertility, everyone would be able to have kids.  And sometimes advice can HURT.  Things like "relax it'll happen" , "when God's ready for you it'll happen" and "pray more" are given, it trivializes and invalidates what is happening.  Infertility is a MEDICAL DISEASE.  You wouldn't tell a person with cancer to relax!  So don't tell that to someone with any other disease!  Like any other disease, it requires medical treatment and cannot simply be cured with relaxing, home remedies, or praying to saints.  

2)  Silence is often worse than bad advice.  When someone close to me knows I'm struggling, it makes me more sad that they don't ask how I feel and what's going on.  Of course there is a time and place to ask and HOW someone brings it up can mean all the difference. Not saying anything makes me believe they don't care enough to know.  This is something SO important to me, so if someone loves me it should be important to them as well.  I'm sure people feel like they are being nosey and intruding, but I'll often keep my answers simple or change the subject if I'm not up for the topic just yet. Sometimes a simple text or "how are you feeling" will do and can make my day.

3)  When people who've never experienced infertility say they understand how I feel: you don't unless you've experienced infertility. Maybe your sister or best friend picked the unlucky card and had the unfortunate experience of infertility treatments.  Hearing about it, even from someone close, and experiencing it are quite different.  I can assure you as I had no clue what I was getting myself into.  Not even the best storywriter could have prepared me for what was coming. Maybe you've had a similar heartache like losing a loved one or you have a medical condition that's difficult to live with.  While there are similarities such as loss, heartache and anger, each situation is different.  Even each person's experience with infertility is different.  It angers me when someone who's never had to deal with sticking themselves with endless needles, has never had to go through some invasive and embarrassing tests on a normal basis, has had to deal with hormonal changes, or has experienced heartbreak after heartbreak, not once but EVERY MONTH or with every failed procedure tells me they understand what I feel!  While some life experiences are similar, nothing can quite compare.  You have NO IDEA unless you've dealt with infertility first hand. Instead try saying you can only imagine how I feel. 

4)  It's pretty obvious that are alot of emotions to deal with when you want to have a family but are physically incapable. But the extent of these emotions no one can ever begin to understand unless you've lived it.  It's not like I didn't get the big job promotion I was working towards....I didn't get the PERSON I long for.  It's not a thing I lost, but a human being....a future and with that my dreams and expectations.  It's the hardest let down I can imagine.  During each procedure, I have already imagined that little embryo 3 years later building sandcastles or singing in the school play.  Losing that dream is like losing a piece of me. 

5)  Hormones suck.  Everyone jokes about women and PMS, but until you've been pumped with more hormones than an elephant can handle don't joke.  While the medication is like magic, making your body do miraculous things, it also reeks havoc.  You are already in a sad, stressful and vulnerable situation.  Add hormones to that.  It's no joke and should never be the butt of one.  They can turn normal anger into rage and normal sadness into the deepest depression imaginable.  You have little control over it.  Sometimes the littlest thing someone can say or do will set you off and you have little to no control over your emotions.  Because your issue cannot be physically seen, far too many people are not forgiving when you have a bad day or moment.  

6)  It's more painful than you think.  You do however get used to it.  In a normal IVF cycle, you are probably stuck with needles over 6 dozen times....all within about 4 weeks.  Who likes needles?  Some aren't so bad, but others hurt! They go deep into the muscle and the lumps and bruising can last days to weeks.  At one point in time,  both my wrists were bruised from IV lines, both sides of my stomach from hormone injections, both elbows from blood draws and both butt cheeks from yet more hormone injections.   And the needles aren't the worst of it.  There are tests and procedures like HSGs, hysteroscopies, uterine biopsies and so on.  Without going into detail, I can assure you they are no picnic.

7)  You lose your humility and it can be demoralizing.  Imagine having your private parts exposed on a regular basis to complete strangers.  HUNDREDS of times?  Does this sound pleasant?  Nope!

8)  It's so lonely.  Even though I know so many others out there are going through what I am, you still feel alone.  The fact is no one really close to me has had this experience.  Out of all my 7 brothers and sisters and all my friends, I am the only one unlucky enough.  You can't help to ask yourself "why me?!!"  You can't help to be angry and feel sorry for yourself at times.  It's simply not fair.  Again, it's not like I didn't get the house I wanted or the car I wanted or the sweater I's a CHILD and FAMILY we're talking about.  I'm the only one out of everyone who has to deal with this and I have to watch everyone else have what I can't!  Sadness over what's happening can bulldoze you at any time.  So many times have I felt like no one understands.  So many times I have sat alone in my house just wanting to pick up the phone to talk or hope someone called or texted me how I am.  People assume that because time has passed, I must be feeling better.  Check ins and phone calls that I do get, get lesser and lesser, leaving me to feel lonelier and more isolated. 

9)  Sometimes hearing simple conversations can hurt.  Everyone loves to talk about their kids.  I LOVE my child and LOVE to talk about her.  I get it!!  But many times in the back of my head I am hurt and jealous.  People with multiple kids get the experience of raising a child more than once.  They get to give birth more than once, they get to take a newborn from the hospital more than once, they get to hear their childs first words more than once...... the list goes on.  I LOVED and cherished these experiences with my child.  Is it so wrong to want to experience it again and to feel angry and denied I can't?  I've often heard people with multiple kids talking about how they spoiled their youngest the most and seemed to cherish these moments the most.....because they knew it would be their last time experiencing it.  Imagine if it was your ONLY time and you weren't given a choice?  I am so grateful and blessed I even had this experience. Having enjoyed it so much the first time, I crave it again.  People often peg me as being ungrateful and greedy for wanting more.  If they took the time to know why I want another child, they would see how grateful I am.  I try to take so little for granted.  Sure there are times I get frustrated with parenting and complain.  It's far and few between when I do.  It angers me when I hear so many people complaining so often about a gift I would die to have!

10)  I have (sometimes irrational) fears of something happening to my child.  If you can grasp all the hardships I went through to get her and all the failures, it would be easy to see.  When things only worked 1 time out of 100, failure and negativity are easy to learn.   I fear losing her because she is my ONLY child....I don't get a back up or second chance at raising her.  I worked SO hard to get her that I am sometimes paralyzed with fear of losing her.  At times people need to understand these fears and let me have them.  I may have more rules than some parents, I may watch over her more than other parents and I may be over protective of her than most.  TRY to understand and don't judge.  She is MY child....I worked for her....let ME raise her.  Let me have these fears and privileges.  I earned them.

11)  It's difficult to hear people speak about money. Ok...this sounds like a weird one and to some extent it is.  But whoever said money didn't buy happiness, never had infertility.  It takes THOUSANDS of dollars to have treatment.  95% of what we paid was not covered under insurance.  Yet insurance covers treatments for other nonthreatening diseases.  In many cases it even covers things such as viagra and abortions.  When you aren't blessed enough to have children naturally this is hard to hear. Our disease and problem apparently don't mean very much, yet others do?  The point is that you can't have a baby without money.  You can't even get a chance at trying.  I've drained my life savings not once, but twice.  We have pretty decent jobs and STILL have a hard time coming up with the funds to make this happen. We struggle.  We bought a house, went on vacations and bought some fun toys long before infertility reared it's ugly head.  What couple puts an extra fund away and labels it the "I can't have a baby fund'?  Noone I know.  Clearly most people take for granted being able to have children the old fashioned and free way.  I rarely buy frivolous things anymore, we cut our expenses and are living a much simpler life to try to afford treatments and a family...something others get for free.  Who wouldn't be upset about having to pay for something everyone else gets for free?    When people talk about their $30,000 car or $5,000 ring or their new gadget, it's difficult.  Yes they earned those things, but so did I....I have a good paying job and can't have those things because I have to spend my money on getting pregnant while they didn't.  That $5,000 ring or new toy they have could have paid for medications.  That $30,000 car could have potentially bought us a family!  Even though it's not MY money, it's hard not to think that way.  It's not fair I'm in debt for something everyone else got for free!  I didn't ask for this.  It may very well be that we have to give up or dream of a bigger family simply because we cannot afford to keep trying.   It's a difficult pill to swallow when others get to spend their hard earnings on fun stuff and "normal" people bills.

12)  Pregnancy.  This is a hard one.  It's a fact of life that the world won't stop for me.  Friends and family will have kids....and what took me 3 years to try for and get will take them 3 months.  Again, not fair but a fact.  It's something I see every day.  I don't need to be reminded that your husband just looked at you and you got pregnant.  Some things just don't need to be said.  You being able to have children naturally is already hard enough to deal with..... how quickly you were able to have them is even harder to hear.  I WANT to be you.... only I can't.  Fueling the fire of jealousy is something people shouldn't do.  Having pregnant people around me and families IS's something I'm still learning to handle.  Seeing someone have what you want SO badly is gut wrenching.  I want people to understand that sometimes I need space.  If I don't attend a party or a shower or I leave the room for awhile, it's likely because I am sad and needed space.  I am happy for you, but beyond sad for me.  

13)  I want people to understand I still feel like I have a hole in my heart.  I feel my family is incomplete.  I love my daughter SO much that I long for more.  I want a to experience it again and I want a bigger family.  I have siblings and firsthand understand the importance of them.  I want SO badly to give her that gift.  It kills me that I can't.  I feel like I am letting her down.  When people tell me that I should be happy that I have one child, it hurts.  While they are half right (because I am lucky), what makes me different than any other warm blooded human that wants more children?  No one judges someone who had their kids easily and naturally so why judge me for wanting more....wanting more comes from such a good place.  It's the holidays and I see post after post on the meaning of christmas and the importance of family.  Most people would agree that the MOST important things in our lives are our health and family.  Everything else is second.  If people can see and preach how their family is so important, can't you see that mine is too? Imagine not being able to create one of your own?  It's quite difficult to hold two extreme emotions in your hands: happiness what you do have and sadness for what you can't.0

14)  If you have questions ask!  The more educated people are about infertility the better they can help.  There's no dumb question. I know sometimes it may seem like you are intruding or you just can't seem to say anything right but I'll be honest or change the subject.  Asking shows you care and want to help me.  

15)  Don't just support me during the results.  It's not being a very good friend if all you care about are the end results.  There's alot I go through in between results and many times this is when I need the most support.

16) Simple day to day tasks can be hard.  You often feel like a failure because your body can't perform the way it was meant to....the way everyone else's can.  Even going to the grocery store can turn into a disaster if you accidentally turn down the wrong isle and end if in the baby section.  You'll never have any idea what it's like to long for a family you cannot create.  Seeing others makes you sad, even though you are happy for them. 

Tuesday, December 13, 2016


Failure is never easy, especially when you put so much time and effort into something you want so badly.  We spent months preparing for this.  We literally poured our blood (lots of it), sweat, tears (too many to count), and bank account into this.  We gave it our best effort and in the end it wasn't enough. It failed.  I am beyond sad.  It's hard to even come up with the feeling that describes it.  Fu%*ing angry, numb, hopeless, devastated.  There's not enough words.  My fingers usually flow over the keyboard effortlessly. Today however they are just sluggish and fumbling. My mind is a jumble of various thoughts.  If this were something different, perhaps I'd be allowed to grieve.  I'd be given time or an allowance for not being myself and for feeling sad and sorry for myself. Yet it seems that because I haven't lost someone or something tangible that it's no big deal and just another day.  But I have lost something: the dream of a family, of a child, of my future and with that a piece of my heart and happiness. I had to return work today and pretend nothing ever happened.  I'm dying on the inside.  After awhile you get pretty good at it to the point you can almost fool yourself.  Even if I did show my emotions, few take the time to understand them.  I've gotten all sorts of "advice" and criticism lately: pray to saints, don't lose hope, eat this.  Yet few people give me what I actually NEED:  Validation... and maybe an ear to listen. Validation that this situation just plain sucks.  I don't need advice how to fix it.  No one can, not even a team of the best doctors.  I don't need advice how to feel:  trust me I have many feelings!  I don't need to be made to feel guilty and greedy for wanting another child when I was already so lucky to be blessed with one.  That's the last thing I need to be reminded of.  It's hurtful and trivializes how I feel.  What makes me so different from any other warm blooded human that wants more than one child?  Am I so different?  Can't I be grateful for what I have and at the same time be sad for what I don't?