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Cushing's Awareness Challenge - Day 28 - What This Month has Meant to Me

When I agreed to blog 30 times in April, I didn't know how it would go or what impact it would have on me.  I blogged about some suggested topics, and some I made up myself, based on how I was feeling or an experience I couldn't stop thinking about.  The best thing about all of this, is it gave me confidence to post my weight on Facebook for hundreds of people to see.  The unexpected happened, when almost no one would comment on the bad things that happened, MANY MANY people commented when I posted I lost 100 lbs.  It was great, and of course, I cried. (I shouldn't have to say that anymore - if something good or not so good happens, just assume that I cried about it!)  I was overwhelmed with the support, from family, friends, old friends, people I went to high school with but haven't talked to since then, everyone.  I started wishing I could have that outpouring of love and support no matter what news I choose to share, whether bad and difficult to discuss, or something awesome.

I think that most people don't know what to say or how you want them to react when you share some bad news. I have dealt with this for the last few years of Cushing's and complications.  I would want someone just to listen and try to be supportive when I thought I can't make it through one more day, but instead no one knew what to say, and a lot of people asked me "What do you expect me to say?  Sorry, but I had a great day?"

I still have not gotten used to the silence on the other end of the phone whenever I'm having a hard time.  I hope that they'll learn from last time what helps and what doesn't, but a lot of times, I walk away from a phone call more upset than when I started.

People ALWAYS know how to react to the good stuff.  That's awesome! Good for you!  I'm so happy for you!  Tell me more!

What doesn't help when your friend isn't doing well?  Some people have it worse than you, think of the good things (this one kills me, obviously I know that, but sometimes, you just need to have a pity party for a few minutes to get it out.)

What DOES help when things aren't great?  Call to check in.  Just listen.  The best thing that I've heard?  You're so strong.  You can do this.  I love you.  I'm here for you.  Anything that you really MEAN and aren't saying just to try to avoid a difficult situation.

You don't have to be a superhero for your friend or family member that's going through a tough time.  Just be there if they want to talk.  Give them 5 minutes to just get it out, try to make them laugh.

I understand that it can be hard listening to someone that's upset, and maybe you're not an emotional person and they are, but the best thing you can do is be supportive and tell them you care.

Comments

  1. It is the wee hours of the morning and I have been reading many pages in your blog. I could just cry out in frustration at what you have been through.

    I think my good friend's daughter has Cushing's and I told her what I suspect just yesterday. She raced the girl to her GP without saying the name "Cushing's" as directed by her brother. "Doctors don't like dealing with a patient who has pre-diagnosed themselves". or words to that effect and probably very good advice!

    The daughter has been fighting mental health issues for 5 years now which may be totally unrelated to CS/CD but she has every visible symptom of CS on the check-list. So now begins the testing. But wouldn't it be even amazing if the MH issues were one of the symptoms of CS/CD and not the problem we have thought it was all this time? This beautiful young woman has been living through such awful times and still managed to graduate college but the weight gain and fatigue etc has worn her down to someone I don't recognize. When I saw her face last week, it clicked. Is this Cushing's? And Google lead me to you.

    I want to thank you for taking all the time you have over these years to express to us outsiders what you have gone through and what we as outsiders can do to help/support the people we love who are going through similar trials and tribulations. No one would wish this on anyone but I thank God someone like you opened a window to greater understanding for the rest of us.

    Now, when the testing takes forever, or if the first diagnosis is negative, I will hopefully be the friend i want to be to this family.
    Chris

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    Replies
    1. Thank you so much for your comment! I tried to email you last spring but it was bounced back to me. How is your friend's daughter doing? Anyone going through such a nightmare like Cushing's needs more friends like you!

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