chronic illnessfaithinfertility

Identity Crisis: Being A Spoonie Spouse-Part 1

As a part of the Identity Crisis series, my wonderful husband was kind enough to agree to write a post about being married to someone with a chronic illness.  We are a unique situation in that we are both spoonies as he is Type 1 Diabetic and I am, well, everything else.  So it adds an interesting dimension to our marriage.  Thankfully we’ve never both crashed at the same time (*knock on wood*).  So I hope you enjoy reading his perspective!  Mine will follow next week!

May 21, 2005 . . . one of the best days of my life.  This was the date in which my wife (Jamee) and I finally walked the aisle and got married.  We started officially dating during my freshman year in 2002 and just one week after graduating in 2005, we were saying our vows to one another.  Vows mean a lot to me.  I hold the belief that when you commit to do something, you should follow through with it.  My reason for bringing this up is because Jamee and I have had to really think through these commitments in the short time we’ve been married.  This is not because we have had marriage problems or anything like that, but because both of us wrestle with chronic illness.  We’ve truly had to be committed to one another to get through all of the trials we have been through and are still going through.

Just over a year after we began dating Jamee began to experience some intense pain.  Before I knew it, here I am, 19 years old, with my girlfriend in an OBGYN’s office.  For guys, this is seriously, the scariest place on earth!  Then before I knew it, Jamee was diagnosed with Endometriosis.  This word just sounded serious.  Jamee then had to have surgery and it went well.  We thought this was it, all was cured.  Then we got married, and for our first three anniversaries, we celebrated them in the hospital recovery room after more surgeries. You read that correctly.  So, all in all, there were four surgeries.  The fourth surgery was the hardest to bear.  Jamee and I began trying to get pregnant not too long after we got married, because we knew time was against us.  After fertility treatments and several other things I will not get into, we were told our chances of having biological children was slim to none.

Even after Jamee’s hysterectomy, Jamee was later diagnosed with two more chronic illnesses: Fibromyalgia and Celiac disease.  It seemed like the hits just kept on coming!  Honestly, I have had many conversations with God and asked Him many questions.  If you want me to be very honest, my main question went something like this: What the hell is going on here, God? I could go on and on about our struggles and how we have wrestled with the “why’s” in our marriage in regards to chronic illness, but since this article is entitled “being married to someone with chronic illness,” I should probably give you some insight on how I personally go about this:

*Be Understanding.
I’m a full-time youth pastor.  I love it when Jamee is at my side when I’m teaching young people.  I love it when she’s able to offer them wisdom and be there for them.  The reality, however, is that Jamee needs to be at home resting when she can.  I need to be understanding to her needs.  She works a full-time job, she’s always doing stuff around the house, she’s always doing things for our daughter (Abby), and the reality is, she does not need to feel like she has to be with me in addition to all of these things.  I do not put pressure on her to come with me to church every single time I’m working.  I also try not to heap guilt on her when she’s sick several days in a row and I have to take a little extra responsibility around the house, mainly with Abby.  Is it frustrating at times?  Absolutely!  Do I wish she felt better so that I do not have to find babysitters for Abby every time I’m at church?  Yes!  But this is not her fault!  She did not wake up one day and say, “This week, I want to feel like crap everyday and lay around!  Awesome!”   Husbands, boyfriends, etc… we need to do some work in this area, a lot of work.

*Be Patient.
Again, this goes along with being understanding.  Patience applies to many things.  With Jamee’s health conditions, sometimes she gets upset and irritated.  I believe I would too.  I know to a degree what this is like as a Type 1 Diabetic.  When my blood sugar goes high or low, I become irritated and impatient.  Jamee is in pain a lot and I honestly do not know how she copes with it.  Sometimes she gets upset with me easier on one day than another (usually because I deserve it anyways!).  Again, sometimes the reason being she is in pain.  Yet she always comes back around on those occasions and apologized because she knows she was speaking in her pain.  This is not me saying she’s always the one to blame because I often times have the gift of being a typical husband:  forgetting to do things around the house after being asked a million times, not picking up something before I come home after being asked, not feeding the dogs (I forget every morning I swear!), etc…  This also applies to our sex life.  Men and women obviously view sex in different ways anyway.  In our situation again, Jamee had a full hysterectomy and still wrestles with chronic pain.  It’s difficult for me to understand why she does not view sex the way I do.  I have to realize that again, when she’s in pain, this is not a time for me to be selfish.  You get what I am saying.  This is not about my needs and what I want all the time…it’s about being understanding and patient.   It’s about recognizing not only my needs, but the needs of my wife when she’s struggling with several different chronic conditions.

*Be Supportive
Simple yet often overlooked.  For instance, I try to go to as many of Jamee’s appointments as I can.  Even if it does not require me being there, I try to let her know I am there for her.  I tell her constantly, “I’m with you until the end, no matter what.  You know that right?”  I try to do little things to let her know I’m not just saying this, but I mean it.  I buy her flowers sometimes; I rub her shoulders a lot, etc… Is this me bragging about how good of a husband I am?  Absolutely not!  I am just saying, these things matter to Jamee and therefore, they matter to me.  I try to support her dreams.  When she does feel like going out or doing something one weekend, I try to go with it.  These moments come and go with her pain so I try and support her when she feels like being out and about!

I feel like I have cheated you as the reader because I could write a book about all Jamee and I have gone through.  There are so many more stories I could share, but this will have to for now.  Above all, my advice would be to stay committed.  I am committed to Jamee despite whatever may come our way.  I’m not just saying this to sound arrogant or like I have it all figured out…this is me simply saying when I took a vow to love my wife, “for better or for worse…sick or poor…” that I meant it.

chronic illnessfaithinfertility

My Identity Crisis

When I became a mom last year, I remember everyone telling me that I would no longer be just “Jamee” but instead I would be “Abby’s mom.”  I always laughed about it until one day I got a phone call from my mom.  She asked, “How’s my baby?”  Of course, I responded, “A little sleep deprived but I’m doing ok.”  She then said, “I wasn’t asking about you – I was asking about Abby!”

Reality hit.  What people said was true!  I’m no longer Jamee instead I’m either Mommy or Abby’s Mom.  I have several favorite “mommy blogs” that I read that have posted awesome blogs about this loss of identity that comes with motherhood.  Two of my favorites are written by Katie and Blair.  What I love about these posts is that they talk about the side of motherhood that isn’t often shared.  I think every mom could go on for hours and gush about the joys and blessings of motherhood but often we struggle silently with the challenges that accompany the blessings.

But over the last couple week’s I’ve been thinking – does the same thing not happen with chronic illness?  As we shuffle between doctors’ appointment we often become the “fibro patient” or “endo patient” or maybe even “the patient that has so many things going on that we have absolutely no idea what to do so we’ll just avoid her as long as possible.”  I can’t help but think of the scene in Patch Adams where the students are taking a tour of the hospital and the instructor is telling the students about the patient with diabetes and all of her complications and Patch raises his hand to ask the instructor what her name is.  The doctor looks puzzled but replies “Margery” so Patch says hello to her by name.

How often do we long to be referred to by name?  How many times do we let our identities somehow become our illness?  I love the quote “labels are for jars, not people” but how often do we do it to ourselves?  We exist beyond our diagnosis.  The last couple weeks because of my flare, I have hardly looked beyond my pain.  I have retreated in many ways and become a shell of the woman I long to be.   As I was sitting in bed wrestling with these thoughts, I began to think about how my illness had affected my identity in three ways – as a woman, a wife, and a mother.  How can I move beyond allowing my diagnosis to dictate who I am and who I become?  Maybe you have found yourself asking the same questions.  Over the next couple weeks, I will be posting a series attempting to answer some of these questions.  My husband has even agreed to do a guest post!

Hopefully you will stick around for the series and hopefully we will find healing and encouragement together along the way!