A Letter to the Newly Diagnosed....

In honor of the World IBD day and our community's efforts to raise greater awareness about the disease, I wanted to write an open letter to the newly diagnosed.  Whether it's your child, spouse, dear friend, or yourself, it's terrifying to hear that you or your loved one has an incurable disease.

Be strong, be brave. There is hope.

I have shared my story of being diagnosed 21 years ago at the age of 13, and I have been equal parts inspired and moved to tears by so many others. Since I have decades of living with Crohn's under my belt (pun intended!), I thought I would share a few bits of wisdom that have become my guiding principles for living with this disease.  My hope is that they help you as you find your own path toward healing and living the best life possible.






Be your #1 advocate - with your healthcare providers, your wait staff, your gym, your family.


In today's world, time is money.  When you have time in front of a doctor, nurse, nutritionist, therapist, yogi, or whomever is helping you, it's up to you to ensure you are your number one advocate.  Always carry with you a list of your medications AND your supplements.  Keep a food diary religiously, and bring it with you to the appointment.  Make a list of questions, including notes about symptoms or general overall items you want to discuss, and have it out front and center.  I find telling the doctor you have "x" number of questions is helpful, so they are prepared and can focus in on helping you.  And most of all, take notes on what they say.  It's amazing the brain fog that happens during and after appointments, when so much anxiety may have been building up to get to that moment.  You think you'll remember, and then all the replies start blurring together... and creating more questions!

Your trusted doctor and his/her medical team should be your go-to source; not online searches or asking others.  Note that I said "trusted".  If your doctor is not supporting you in this journey toward healing, find a new one.  That my dears, is unfortunately also up to us.  I drive 3 hours one way to my gastroenterologist because he saved my life. 

That being said, your healthcare team can only help so much.  The rest is up to us, step by step to do our own scientific investigations in baby steps.  There are a million diets out there; try them out and find what works for you.  Take a restorative yoga class, start a journal, join a support group - find what works for you.  And understand what works for you may not be the right match for another Crohnie.  We must love each other, as well as our different journeys.



                         

Don't ever let someone tell you that you can't do something (unless, that is, eating bad foods for you!)


When I was diagnosed in the early-to-mid 90's, so many "helpful" voices try to guide my family with their thoughts of what I would be able to accomplish and what I would never be able to do.  You may hear the same, whether they be from others or that nagging voice of doubt inside your own head. 

Our questions and doubts differ but are universal in their theme, "Will I be loved, and find happiness?"  YES!!

Your deepest questions may be whether you will be able to have a family, or whether you will ever find someone to date and understand your condition.  It may be whether you can have that career you want, or whether you can find a way to go to college living with IBD. 

The answer is "yes".  Your family may be different than others.  Your date nights may involve staying within 10 feet of the bathroom watching a silly movie on the couch.  Your career may end up becoming helping others with IBD.  You write your destiny.  Don't let others tell you otherwise.

Also, don't compare yourself to others.  This disease is so individualized.  A family member of mine also has Crohn's, as do a few friends and co-workers.  I would drive myself crazy if I over-analyzed why there are some things they can eat or lifestyle choices they can make that would be detrimental to my own health.

Be open, but know that some will be closed to you.


It's incredibly difficult to be living with an invisible disease.  To be told countless times "but you look fine" when you feel like you are dying on the inside.  To be questioned by co-workers about time off or a need to work from home.  By partners who know and love, but still sometimes get that quizzical look on their faces.   By friends, whom you may start to lose because your social calendar simply must be so selective to maintain restoration and health. 

My fellow IBD'ers, I am still learning this one myself.  I have always been an open book person, and can't disguise my emotions.  I am an over-sharer.  I talk about what others shy away from.  I refuse to change, as I won't live my life any other way than openly, honestly, and with self-love along with love for others.


Practice the art of gratitude, and practice the art of whatever fills your heart.


This simple act of practicing gratitude got me through my last flare.  It's counter-intuitive, isn't it?  Those days and weeks and months when I can't even get out of bed, I end up feeling more gratitude for the universe and my life than any other.

It's not unique to our disease.  You hear it from others who suffer from chronic conditions.  I think it's because at our lowest, the smallest amount of victory or relief of suffering or beautiful thing in the world is like a pulsation of color in a black and white world.  We revel in it.  We crave it.  We look for it more. Within the pain and suffering, you often find glimpses of God's carrying us through the journey.

Carry that yearning with you, always.  Keep looking for gratitude, even when you're in remission and you forget about the lower days because you've blocked them out.  Keep looking, because then you will help others discover the beauty as well.






Crohnies unite!

Comments

  1. Hi Jamie,

    I'm writing to tell you that your post "A Letter To The Newly Diagnosed" (http://crohnietravels.blogspot.com/2014/05/a-letter-to-newly-diagnosed.html) is absolutely spot on!

    We'd love to feature it on our MyCrohnsAndColitisTeam blog if you don't mind us republishing (we'd include your bio, byline, link etc).

    Your writing is so genuine. "The truth is that only one thing matters when you want to achieve a dream – self belief; a repetitive internal statement of “I can and I will”." <--- our readers can relate! :)


    We are starting a guest blogging series to bring hope, understanding, and encouragement to people living with IBD. We would also share on MyCrohnsAndColitisTeam.com and on our social media channels.


    MyCrohnsAndColitisTeam.com is a growing social network for people with IBD. We already have 15,000 members and 26,000 Facebook fans. If you're already on MCCT, can you let me know your username? That way I can feature you AND the blogpost. Email me if you are interested!


    Have a wonderful day,


    Michelle


    ----
    Michelle M
    michelle@myhealthteams.com
    Social Media Manager, MyHealthTeams.com - @MyAutismTeam @MyBCTeam
    @MyMSTeam @MyCrohnsTeam @MyLupusTeam @MyCOPDTeam @MyRATeam @MyFibroTeam

    ReplyDelete

Post a Comment

Popular Posts