Even celebrities know the truth of it: it is hard to stay in a relationship these days, but it is even doubly difficult to do so when placed in the middle of both internal and external pressures.  Songwriters hoped their words have a more lasting impression once set to a memorable tune.  As if a melody can stitch the words into your heart permanently.  The examples of staying with your mate through thick and thin applies to both sexes:

'Stand by Your Man' and 'Are you Strong Enough to be my Man?' are just a couple song titles that pop into my head as I remember the songs with the theme of togetherness in spite of the world pressing in.  It seems so easy to stick by someone's side when the money is coming in and you both have your health.  It is a far different story when one person in the relationship becomes ill.  When I say ill I do not mean to imply someone with an every day common cold or allergy, but someone with a life-altering illness or accident that leaves that person in utter pain and shock as they are forced into a life completely different and unalterable than the life they lived before.

Sadly, a devastating illness such as Fibromyalgia, Lou Gehrig's disease or IC are too much for some individuals to handle and instead of staying in the relationship through 'thick or thin' or 'for better or for worse', they leave and in their wake leave someone more emotionally hurting than the summation of their physical pain.  A wound like that takes a very long time to heal.  So when I read IC patient's tales about spouses or boyfriends/girlfriends leaving them because they could not deal with supporting someone with a complicated and serious disease, my heart goes out to them.  My only words of advice would be to know that if they cannot support you in your pain how can you trust them to support you when life is only paved in roses?  This is an unreasonable and unreal view of the world.  Although the pain of losing them is real I would hope that someday you might see that their leaving you allowed you to grow into a better person. 

Living with a chronic pain disease is not an easy thing but it does leave one with the ability to look at what (and who) are really important in life.  Life is whittled down to its barest essentials: sleep, food and love.  Sometimes the love of  a good friend or family member fills in the gap where a romantic partner might have once been.  Hold on to the people that fill you with love and support and let those go who make you feel guilty or ashamed for feeling pain and for 'getting' a chronic disease.  The people that stand by your side through thick and thin are the only people that should really matter to you. 
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Have you ever been infatuated with the idea of something that you are not sure that you yourself might ever experience?  Where every time you turn on the television, read a book or listen to the song on the radio it seems that everyone is experiencing something that alludes you.  Most of my female friends, family members, co-workers and acquaintances have experienced the thing that I have not experienced yet seems to consume my mind a lot these days: pregnancy and motherhood.  Some days I resent the questions: Do you have kids?  Do you want to have them someday?  When do you plan on getting married and settling down (the 'settling down' part always seeming to imply motherhood as being that settling down force, as if a woman without kids is unsettled, wild and unruly). 

I am reaching my mid-30s and I love children.  I really do love being around other people's kids but I wonder: Would I be a good parent?  Would pregnancy affect my IC?  Would pregnancy and childbirth bring my IC out of remission?  Will I regret not experiencing motherhood ten years from now?  Am I selfish for not becoming a mother-like so many articles that I've read and comments I've overheard by women who are 'in the know' with children in tow?  Should I proceed with having a child with the knowledge that if I have a daughter that she has a chance of someday having IC?  Do I want to be a mother if that includes being one that is more tired or has IC symptoms on a daily basis?  And then I wonder if I am just looking for excuses or something to place the blame for my indecision (or decision to either not procreate or to wait to proceate) to have a child solely on being an IC patient.

I can't blame everything on IC but how can living with a painful bladder disease for seven years not color my thoughts with yellow for: proceed with caution?  My fiance and I could not be intimate for three and a half of those seven years because of IC and the related conditions of extreme dyspareunia and vulvodynia.  I call them our Lost Years.  While my IC reared its ugly head so many of our friends got married and began having children.  My mailbox (and virtual mailboxes on Facebook and my personal email account) have been flooded with wedding invitations and birth announcements.  Many times I choked back tears as I dashed into Target, hoping their bathrooms were clean and open, haphazardly printing off a gift registry list.  I have purchased a countless number of onesies, too cute for words teeny socks and paraben free nipples.  I have thrown numerous close friends' baby shower's with fun start-to-finish themes from rubber ducks to Noah's Ark, always with the thought in the back of my mind: If I get over IC will I have sex again?  Will I experience pregnancy, birth and motherhood? 

Those thoughts quickly fled as the months turned into years of cruel celibacy.  The silent scream that echoed in my brain for years when ovulation caused cruel labia pain and inflammation-so severe that wearing clothing was as painful as a medieval torture device.  Parenthood was the furthest thing from my mind at those moments of taking things one day at a time as I drove from the acupuncturist's office to meditation classes and then home to make my IC friendly meals.

Those Lost Years are behind me now but I still have some residual IC pain and symptoms like a grey ghost lurking in the shadows.  It is really a difficult decision to make although I know that I now have less years in front of than behind me to consider motherhood as an option.  Ovulation is not the extremely painful monthly reminder loudly announcing that I could have a baby-now is the time that it once was, but it is not a silent event for me and each month I could probably tell you the exact moment that I am ovulating.  IC has taught me so much about my body that I am in tune with the subtle hormonal changes that occur throughout the month.  I think about pregnancy and motherhood more often than I would care to admit these days.  Babies haunt my dreams.  Sometimes my cries echo along with theirs as I remember the intense pain of IC. 

Maybe someday I will make the choice to become pregnant but for now I am happy bearing the fruit of many years of hard work and delivering words of support to people suffering from IC.  It is what I have to offer the world right now and it seems the closest thing to a flesh and blood embodiment of myself.  IC awareness and support is a sad but important child in my eyes.  
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Thank you Michael Stipe for providing the perfect song title for my latest IC blog post.  It is very hard to capture the feelings I have for my fiance who has stood by my side throughout my health breakdown, medical tests, IC diagnosis and my worst years living with extreme IC and vulvodynia pain and trying to live in a world filled with food, smells and products that rendered my life unbearable.  So many relationships do not make it through a diagnosis of a such a devasting disease which not only affects overall health of one individual, but the dietary restrictions, sleeplessness, pain combined with sexual pain renders 'normal' intimate relationships almost impossible. 

I would often question my fiance's wish to stay with me and sometimes thought that my IC would not be so hard to bear if someone who had known and loved me when my physical and sexual health was at its best did not have to see the pain, despair and depression in my face every single day.  We lived in the same physical space but lived in separate emotional spaces.  Empathetic and shocked by the changes in our relationship.  We cooked and ate and slept separately for many years.  It is a hard place to be, in love yet separated by pain. 

The love that flows through me to my fiance (and vice versa) after making it through the darkest moments of IC is immeasurable.  There is a clarity and a joy that other seemingly difficult times together does not touch.  We have made it through IC.  We can make it through anything our hand holding says.  Meals now shared together are a communion between two souls that were once kept hungry by sadness and separate meals. 

This post is for you, my love.  Thank you for sticking with me through the dark times.  Your blue eyes and your steadfast love have been my constant guiding star.
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Sometimes it feels like the worst part of living with IC, besides the chronic pain, fatigue and allergies to just about everything, is how it impacts and affects our relationships.  Sometimes those that we are the closest to may not truly understand how to react to our sudden spiral into poor health.  Some family members and friends might respond by becoming withdrawn or unable to express their true feelings to you.  Others might support you to the point of going overboard by inundating you with every conceivable print out on: aloe vera, TENS units, overactive bladder, cranberry juice, etc. 

It might be difficult to not get upset with either of these reactions by friends and family members.  We have to remind ourselves that they too have been impacted by our diagnosis of IC and they have to deal with it in their own way.  A chronic illness is similar to experiencing the death of a loved one and we (as well as our friends and family members) may go through the following stages of grief (as identified by Elizabeth Kubler-Ross):

  • Denial (this isn't happening to me!)
  • Anger (why is this happening to me?)
  • Bargaining (I promise I'll be a better person if...)
  • Depression (I don't care anymore)
  • Acceptance (I'm ready for whatever comes)
  • Shock or Disbelief
  • Guilt

    • Know that these steps are a normal part of the acceptance process as you and your family and friends come to terms with the diagnosis of a chronic illness.  You might find it helpful to seek assistance from a licensed psychologist, counselor or pastor to help you (and your loved ones) as you experience the stages of grief.
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    Relationships 10/06/2009
     
    I would be lying if I said that none of my relationships were affected by IC.  It is a true saying that you find out who your true friends are when you are faced with tragedy or diagnosed with a chronic disease.  Although, in their defense, I am sure that my dive into depression seemingly overnight, a sudden and severe shift in my eating habits, and dealing with intense pain in my bladder and vagina, caused me to push some of my friends away in the beginning.  For friends that I lost this way, let me say that getting IC was unexpected and I hope that someday you will understand my actions. 

    If I let myself, I would be able to remember all of the cruel and downright heartless things that were said to me by co-workers, friends, and family members who did not understand the pain and symptoms of IC, and especially the need to force my 125-pound body into going on the strict IC diet.  (Why would anyone choose a diet such as this unless there was an absolute need?)  I realize now that people were concerned about my well-being and they were not very educated about IC.  I hope that I will learn from others' mistakes and if someone I know is diagnosed with an illness that I do not understand, that I will research it, and offer support and non-judgment of their treatment plan. 

    My fiance and I were going through hell at the time of my diagnosis of IC.  As if losing a job, two cats, and moving mid-way through a college semester wasn't enough my body began to tell me that I had neglected it enough, thank you very much.  With an already fragile relationship on the line, adding IC to the mix was adding insult to injury, as well a change in eating habits and sleeping arrangements as we both delved into the pits of depression.  The loss of intimacy was unbearable for both of us.  There were many months, no years, that I doubted that we would make it through these dark times.  So it is with great joy that I relate that my IC is manageable (almost non-existant), my relationship with my fiance is better than it has been before I got IC, my relationship with my family has never been better.  Oh yeah.  I have made new friends who nurture me when I am down, and who I nurture when they are down.  Isn't this what relationships are all about?  Any relationship worth fighting for can make it through the dark times.  And for that, I am thankful.
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