“Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend." - Sarah Ban Breathnach

Wednesday, April 29, 2009

Tipping Point

I had an experience last night that normally would be too painful and personal to share -- except that I know that many of you have been here before.

My husband and I met with our very well-intentioned ecclesiastical leader. He wanted to know what he could do to help our family, and he was also there to counsel us on what improvements we could do, as well. I must say, he approached the meeting with love and concern. This is a very good man, whom I love and respect as well. He is not, however, very well-spoken -- he's a man who has worked the land all his life, so he can be a pretty blunt.

He encouraged us to set stronger boundaries and responsibilities for our children. He told my husband that, although he works hard starting up our new business, he can't take it easy at home. He needs to be the enforcer and work alongside the kids to keep their feet to the fire. All very welcome advice, I must say!

Then, he told me he was going to likewise be blunt with me. He said, "I know you have a problem. Get over it."


I tried to explain that I have a medical condition, and that I have been trying to "get over it" for the last two and a half years. He kept repeating, "I know you have a 'problem'" but would not actually concede it was a real medical condition. He then went on to tell me stories about people who defied modern medicine and were healed -- a girl who was told she would never walk, who walked; and then she was told she would never run, and she ran. A boy who had asthma so bad that he was tented three times and his parents were told there was nothing more to do for him who eventually went on to play varsity basketball. A woman who had double vision but taught herself how to play the piano.

Would he have told me to "get over it" if I had MS? Or cancer? Or a stroke? If I were a paraplegic, would he tell me I could get up and walk -- if I only had enough faith?

My shock and disbelief overshadowed one bit of counsel that was actually appropriate: he suggested that I not allow my "problem" to consume my attention, my focus, and my life.

What if, instead of buying into the stigma that people with CFS are lazy, crazy, or depressed, he had been informed about CFS? Maybe he could have counseled me to set priorities and be aware of how I use my precious "good" hours during the day (well-needed advice, I must admit; I can waste time sometimes). Maybe I would have left with some ideas that would strengthen me as a wife and mother, that would bless our family. Maybe I wouldn't have come home and cried myself to sleep.

So, I have been nervous about starting my e-mail campaign for ME/CFS Awareness. I know that this is exactly what I am opening myself up to. But, this is the tipping point for me. Good people like this man need to be aware of what this disease is and what it does to people. I believe it is just like "Horton Hears a Who" -- if enough of us raise our voices, then maybe, just maybe, we'll be able to finally pierce the surface of ignorance and we will finally be heard.


Lori P said...


I am so sorry you experienced that from someone who is there to counsel you and your husband. I'm sorry that, even though YOU know he was being ignorant, it still hurt you to hear what he said. You're right, there are good people who just don't know better, but it's not fair for you or your family.

Keep the faith, girl. You're doing a good thing.

Sue Jackson said...

Shelli -

Funny that you ended with a reference to Horton because I wrote a blog entry last year called "We Are Here, We Are Here!" along the same lines!

I'm so sorry you had to go through that. Something similar has happened to all of us at one point or another. It's such a shame that people don't understand how serious CFS is. I know of someone whose daughter clearly has CFS (started with mono 5 months ago - classic symptoms), but the Mayo Clinic just told her mother that CFS isn't a real diagnosis. It can be so frustrating!

We just have to keep trying to educate those around us and to try not to take it personally when others don't get it (easier said than done!)

I also did an e-mail/educational campaign for CFS Awareness Day the first few years after my diagnosis. A few of my close friends thanked me for the information and appreciated it. Not one single person in my entire family even replied to me. Some of them have come around since then (and some haven't). We have to be very careful not to waster our precious, limited energy on bitterness, anger, and resentment - again, easier said than done, but I'm still trying!!

At least you know there's a place for you - here in the blogging world - where EVERYONE understands what you're going through!


Renee said...

I am so sorry you have had to go through this..I am amazed that a church leader would speak so bluntly and negatively about things such as your health...stunned I think. First of all, my husband is a church leader...a pastor...and he would never speak like that nor would any of our friends who are leaders. Second of all, it sounds like he feels being sick and staying sick is somehow your are to blame. He minimized your pain and suffering for reasons that are his own. There are some who do lean towards the idea that IF you had enough faith you would be healed.. What he said to you ~
I don't think that this is "what Jesus would do".
He may have been well intentioned but unkind, Shelli. In turn, I am being blunt I know.
Our illnesses do not need to consume our life, BUT they do change our lives and we must learn to live the best life we can within the boundaries of them.
I think it takes great courage to do what you are doing with asking for support and also with your willingness to be part of the CFS/ME campaign. If you can help one person understand and advocate for this illness and will be worth it.
I am going to end this now as I have gotten a bit disturbed over this man's judgement of you...sigh..and I don't want to make things worse in my response.
gentle hugs Shelli
God is with you

Unknown said...

Oh Shelli~
I've had someone tell me that - if I had enough faith I'd be healed - and it is SOO frustrating! Like you're not doing everything you can to get better ... give me a break. I do like his words to not let it consume ... that's a good reminder for us all. And despite your frustration you are taking a very positive response - to educate! I say kudos to you.

Dusty Bogwrangler said...

I'm angry on your behalf. Rendered speechless in fact. But you are right, he is coming from a place of ignorance. In your position I don't know if I'd have the presence of mind to recognise that. Informative post for me, thanks.

me/cfs warrior said...

Oh my gosh. I would have felt so hurt and even betrayed by this. It must have felt like a kick in the gut. I'm sorry you experienced this.

I wish you much peace-


Earth's Little Treasures Hand-made Jewelry said...

I was raised in the Mormon church, and so I know EXACTLY what you are talking about. I had about 300 Mormon relatives tell me the same thing...that attitude of theirs, while it is ignorant, almost killed me as I kept trying and trying, and yet getting sicker and sicker. It drove me right out of the church. 25 years ago when I got sick there was no such things as blogs for people like us to come together and support each other, and listening to that ignorant advice over and over just left me with nothing to hang on to.
I had to learn and search out other means of spiritual food in order to WANT to keep fighting. I am so sorry you are having to go through is so painful. The wonderful thing is that there are people who do support you and care that you are doing the best you can. WE are here for you