Fighting for children with IC

Every so often along comes an article that is difficult for me to write.  And when I say “article,” I mean an article for a publication and not a blog post, though some of those have been difficult as well.  It’s been a little while since I’ve written something that’s really gotten to me.  But, that happened lately for an article I put together for IC Optimist magazine, the publication of the Interstitial Cystitis Network.  It’s an article about children with interstitial cystitis.  (You can buy the issue with my article in it here:

This is from a family vacation to Myrtle Beach when I was 3, which was right around when my bladder symptoms started.

I’ve written about IC both personally on this blog and more often professionally for publications.  It’s a chronic, painful bladder disease I’ve dealt with my entire life.  In fact, when I was assigned to write an article about children with IC, I didn’t think too much of it because I was a child with IC.  My symptoms started when I was 3.  By the time I was 5, I had been through the whole gamut of bladder and kidney related tests.  I’d been on a crazy amount of antibiotics to prevent UTIs.  It wasn’t until I was 13 that I heard the diagnosis of interstitial cystitis.  I saw a few different urologists.  I saw a pediatric urologist who told me that kids don’t get IC and I just wasn’t urinating correctly.  I saw an adult urologist who told me I’d have to give up all sorts of food and come in every so often to have medicine put into my bladder.  My mom tracked down the one urologist in the state who specialized in IC (not so easy to do in those days before the Internet) and he finally helped me with some oral medication.  In fact, it’s the same medicine I still take to this day.

While I had a very good childhood with a loving and supportive family, I also have many memories of my childhood intertwined with my bladder.  There were the gym classes in school where I had to sit out because I felt too bad to run or do vigorous activity.  There was the day I got my first 10-speed bicycle and I felt so bad with a UTI that I only rode it for about two minutes before parking it in the garage until I felt better.  There were the sleepovers when I’d have to take along my antibiotics for my friend’s mother to give to me.  There were the parties where I had to ask for something to drink besides punch or juice because I knew I couldn’t have it.  When I got older, bottled water made my life so much easier.  (In fact, a couple of years ago, I went to an event with my mom and found that we had both stuck bottles of water in our purses for me just in case only punch was served.)  There was the special pass I had in middle school to allow me access to the bathroom at all times.  There was the letter I got from my high school just before I started my freshman year saying that hopefully I wouldn’t have as many absences in high school as I had in eighth grade, which was one of my worst IC years.

Me around the age I was when I got my 10-speed bike that I wasn't able to ride for long on the first day because I felt too bad.

These aren’t necessarily bad memories, they are just part of my life.  My bladder has always played a role in my life in some way.  I’ve been aware of it far more than the average child, young adult and grown-up.  It is what it is.

And so for all of these reasons, I wasn’t trepidatious about writing about children with IC.  I knew them.  I was them.  But, something has changed since then.  I’ve become an aunt and a mother.  While I related to the children, I also realized I was now relating to the parents.  I have all the usual fears mothers have for their children, but I also am terrified of passing on IC directly or indirectly.  I literally pray about this multiple times a week.  I ask for God to stop this disease with me.  And I plead for His help in dealing with it if it’s not His will to stop with me.  As I talked to sources for this article in the back of my mind I saw more than myself as a little girl with bladder issues.  I saw the faces of my niece and my daughter.  I worried still about my nephews and son.  I worry most about the girls, though, because the majority of IC patients are female.  When I thought of what I went through, when I heard what other children were going through, my breath stopped as I related that to the precious little girls I love who are now 6 and 4.  Neither of them have bladder symptoms (praise God!), but I know that can change.

And my heart has broken.  My heart continues to break for children who go without diagnosis and are told they have nothing wrong with them or they are going to the bathroom incorrectly.  My heart has been broken in doing research for this article and finding there is no one strong advocate in the medical community for children dealing with interstitial cystitis.  No one.  My heart has broken and my blood pressure has risen in anger after numerous pediatric urologists told me they didn’t know enough about IC to talk with me.  Of the nine pediatric urologists I reached out to, only two would talk with me and both told me they were far from experts on IC in children.  Do these children not deserve better?  Do they not deserve more?  Do they not demand attention?  Do they not deserve a better way of life?  Do they not deserve to be children?  Is there no one who will stand up and fight for them?  Why is there this horrible gap in medical care?  Why are pediatric urologists still so afraid of diagnosing IC?  Why are some pediatric urologists still so backward in thinking that children can’t have IC?

Middle school me. Middle school marked the second worse time I've had with my bladder in my life. Only when I was just out of grad school at age 23 did I feel worse for longer.

While I always find hope for the future in my faith and in my God, I also find hope for the future in researchers who are delving into IC in adults.  I find hope for studies being done that might one day find answers to help adults and children alike.  My hope comes in doctors like one in particular I spoke with who has a passion for caring for his pediatric patients and will do whatever it takes to make sure even his IC children patients are well cared for.  I find hope in the parents who are out there fighting hard for their children and demanding better care.  I saw it in my own parents who refused to settle for unhelpful, callous doctors.  I saw them listen to me, believe me and fight for me.  I see it in other parents who are now doing the same for their little ones with bladder issues.  It’s not an easy road.  I can only now start to understand where the parents are coming from.  I know that no matter what either of my children may face, I would fight for them if it took everything I had in me and then some.  I would not stop until someone listened, until someone gave me answers.  And that is what we need for interstitial cystitis.  We need to find answers for adults.  We desperately need to find answers for children.

Is there more to say?  Is there hope to be had?  I don’t know.  I really, truly don’t.  As I continued work on the article, which doesn’t include any of my personal experiences or opinions (as it shouldn’t), I thought of what I would say to a child and her parents dealing with IC.  This is the best I can offer to the child:

Don’t give up.  Your bladder will always be a part of your life.  You will always be aware of it.  It will intertwine itself throughout what you do, but it will not define you.  You are now and always will be more than a messed up bladder.  You are a person.  You have talents and abilities unique to you.  Don’t let your bladder overshadow those.  Some days it will, because that is the nature of this disease, but don’t get stuck there.  Keep fighting.  Keep fighting every day to become the person that you were created to be in spite of and perhaps because of the challenges you face.  Stay strong.  Keep fighting and know that you will make it through this.  Know also that you are not alone. There are others out there who are going through the same things you are.  And we all agree that it’s not fair.  It’s just not, but it will be OK.  You will make it through.

And to parents: Keep listening.  Keep fighting.  Keep understanding.  Know that your child is more than her bladder.  Know that the little things you do, like making sure she has something safe to drink or eat at a party, may make her a bit grumpy right now because she doesn’t want to be different, but she will appreciate it one day.  She will look back and know that you did your best and that you made sure to look out for her always because that’s what you do.  That’s how you love.  And that’s the best gift you could give.  Understand and don’t discipline for multiple bathroom breaks.  Be compassionate.  Be caring.  And keep fighting.  I say it again because it’s important.  Keep fighting until you find a doctor who will listen and work with you to give your child the best quality of life possible.  Good doctors are out there who are treating children with IC.  Don’t stop until you find one.

We are in this fight together.  Fight the good fight!

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