I am going to net it out. No extraneous words. No gentle approach. My disease is not the result of my belief or unbelief. Period.
There is a subset of people who think that they have a special insight into my disease process. They are not part of the medically trained, and they do not have myotonic dystrophy. In fact, they don’t live with, nor are closely related to, anyone who has a chronic illness.
What they do have is an inordinate belief in themselves. They are ordinary people who think they have special wisdom Maybe they do, but I’m not buying it.
If they do have special wisdom, then why are they so obtuse? Instead of considering the harm they are causing, they speak their truth as if they were imparting an here-to-fore untapped resource. They single out the weak and sick. We, who are already fighting against our diseases, must also have to hear how it is our fault. Ultimately, we are the cause of our suffering.
I am on a rant today!
Imagine being told that your height is the result of your unbelief in the power of positive thinking or the result of your childhood. Yes, I did just say that.
A couple of years ago, I was blindsided by a woman who approached me with her special knowledge. If I would only open myself up to let the Supreme Being (her god) heal me, she admonished.
“Your childhood is holding you back,” she emphasized, “Your body is being traumatized by negative parenting.”
Somehow, she had decided that she knew the cause of my disability.
What she didn’t know was that I have myotonic dystrophy and that it is a genetic disease. Her lack of knowledge didn’t stop her, though. Her special insight had revealed exclusive divination to her. She was only the messenger, and I needed to heed her message. She was adamant and convinced. Oh, there was not a doubt in her mind. This wisdom was so rare that I needed her to tell me.
This was not an isolated event. Strangers and friends(?) all feel at liberty to reveal to me how I can be healed if only I believe in whatever they believe. Oh, of course, I also have to believe that they are in possession of revelations.
The latest experience occurred just a few days ago. Someone I have known for years sent me an email in which she told me that she, too, had received a special revelation. Interestingly, her message was vastly different from the woman I mentioned above (and the others that have approached me over the years). In the email, my friend told me that I needed “just to believe” that there was no such thing as disease. If I could just un-believe in the reality of illness, then I would not have myotonic dystrophy. Her reality is the reality.
My counsel to all that wish to share a truth: Make sure it is the truth and not a truth. Second, seek a second opinion about that truth.
To all the special messengers: If your words are dishonoring, disrespectful, and disheartening, keep your message to yourself. Period.
The rePurposed Life 
Oh, be careful little truth what you say. You have the right to rant every now and again. The Truth shall set you free, even in and through a disability.
This I pray, that we all would be renewed in the inner person day by day in Jesus name.
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We do not determine what God ought to do; rather, we should determine what God wants us to do. (Jerry, thank you for taking the time to comment.)
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Oh, that’s good! Help me not to “ought” God.
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Ignorant people without compassion for their fellow human using God’s name.
I love your painting, Rose. It’s beautiful and tranquil. 🙂
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Thank you for your comment and your compliment. I wish we could see people’s hearts before we experienced them.
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I hope you feel better now. Some people are just too rude.
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I do feel better. It always help to write (and to have a friend like you).
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Thank you for your friendship too.
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Your faith,your God, and you are beautiful…. Even your “rant” shows your insights and your ability to share and express your innermost feelings. I love you.
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Wow. This makes my blood boil. As Dennis said, even in your rant, you show such grace. Your faith or beliefs has nothing to do with the genetic aspect. Look at Julie- she was praying for healing but God desired to have her with Him. It had nothing to do with a lack of faith. I hope you are encouraged by His strength daily and with the knowledge that it is within HIS plans for our lives. And not to make light of your disease, but rather I am assured that you have reached people and shown His grace and love in spite of, or because of your disease. I love you and am always encouraged by your strength and devotion to Him.
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You are right, of course. Julie’s faith was evident in everything she did. Our lives are so much more than the limitations of our bodies. It is sad that people, in their attempt to be helpful(?), cause harm. Not because I am shaken by their statements, but because I am often at a loss of how to respond. Several people have been helpful in this regard. Slowly, I am coming to the place of understanding that I need to tell them I disagree with their assessment. Of course, gently and graciously. (The first woman who approached me was offended by my rejection of her special knowledge – and still is to this day.) I love you. You and your mom have always shown me grace.
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this resonates deeply. I think often people confuse religion & spirituality. The dogmatic side of them informs others as to how they should perceive things, you know. They only see their distorted perception based on their own personal belief with no room to consider anyone else’s. It’s not accurate or fair. I’m glad you wrote about this. I’ve struggled with some of these same encounters & because I’m part of a body that accepts a wide variety of faiths (as I see truth in many different schools of thought) I get really uncomfortable with people who try to cram their religious thoughts or principles down people’s throats with nonsense like you illustrated.
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First, thank you for taking the time to comment. To be compassionate with those who are facing health issues does not equate with telling them how they can “fix” it. I have had several people share stories of similar behaviors across different health issues (including cancer, MS, fibromyalgia) and, now, you. May we continue to speak up (with gentleness and firmness) when we encounter such misguided “help.”
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Good rant, Rose! You are amazing and I love you!
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Because of your comment, I had to re-read this post. My, oh, my, I was on a rant that day. Because of all the comments I received from this post, I have found a new way to deal with these revelations. Simply put, “We do not determine what God ought to do. Rather, we determine what God want us to do.” I appreciate all the time and effort you put into reading my blog and making comments. I love you.
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Your rant made my mind jump to this passage.
His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him.
That response comes from a person who truly knew what it meant to love.
Your blog theme “The rePurposed Life” reinforces that response.
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Thank you. I consider you a friend.
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I was drawn here by your lovely painting, such beautiful colour. I can’t comment and don’t want to intrude since I am not religious. But those often in the know, have very little knowledge.
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Thank you, Anita. Religious or not, your comments are never an intrusion. Some people have belief systems that are rigid in their approach (e.g., immigration, Democrat vs Republican, immunizations). In their zealousness, they harm others. I like your statement that “those in the know, have very little knowledge.” You are eloquent as always. Hugs to you, dear, articulate, creative person.
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Aw, thank you, Rose.
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I forgot. Thank you for your compliment on my painting. It is a small piece, but for now it is one of my favorites. I am in the midst of trying to create a larger piece using a slightly different technique.
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I genuinely look forward to seeing that one.
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