Doctor’s aren’t magicians?

I was just talking with someone the other day about the subtle expectation we tend to have that given enough resources, anything can be fixed, including our health. He mentioned how we always think doctors know everything, but one his friends (a doctor) admitted he was faking it half the time. I laughed and said that’s my own number one rule in first aid emergencies – looking confident, authoritative and in control. The last thing I need is an injured teen panicking, that will only hurt them worse. So I act like I know what I’m doing and hide any fear that I’m feeling (I am first aid certified, so I’m not faking my response).

But it is a strange thing when you realize the people you assume can help might not be able to, when you start to lose some of that confidence and naive trust. Realizing there are some things doctors just can’t do much about is a disconcerting and scary prospect.

When Noah was finally diagnosed with localized scleroderma, it was a relief at the time. We had spent a year and a half trying different doctors, treatments and tests trying to figure out what was going on with the skin on his face with no luck. Having a diagnosis was something we could act on, and of course, being close to experts meant we were golden. Especially when he responded well initially to treatments.

Then the treatments stopped working and started hurting him. So now we’re trying something else, but it really doesn’t seem to be working. It’s a frustrating reality to have sinking in more and more; this disease does not have a cure. Doctors don’t know everything about it. The experts and top brains in the scleroderma field are still experimenting with treatments. The best luck they have had are with medicines designed for other conditions and diseases that just happen to slow down or stop the progression. Unfortunately, it’s a rare disease that takes years and years to run trials on, which puts it low on the priority list for funding research.

It’s hard to be patient. When the best you can hope for is something to halt the scarring and tissue deterioration, without hope of the damage healing, time lost on ineffective drugs just results in accumulating scars. I made the mistake of Googling ‘localized scleroderma’ the other week to try and find a catchy image for a blog post. It was a terrifying and not at all what I had intended to find. It was the first time I had seen graphic images of Noah’s condition in full force.

June is Scleroderma Awareness Month. I would encourage everyone to visit and like the Scleroderma Foundation’s Facebook page to learn more about this disease. You can find my other blog posts on my son Noah and scleroderma here.

3 thoughts on “Doctor’s aren’t magicians?

  1. Sorry that Noah has to fight with this thorn in the flesh. It’s extra tough for a kid. They don’t understand why. Can only point them to the Great Physician and let them cling to the edge of His robe…comfort him as best you can, love on him, pray for him and give him any treatment you can find that might help.

    Doctors should feel small and ignorant once in a while. We don’t know a fraction of what there is to know about the human body or how to treat it. They should all have to look to God for wisdom as they practice medicine.


    • Thanks Jeremy, I love this part, “point them to the Great Physician and let them cling to the edge of His robe.” I’m going to hold onto that image of Noah clinging to His robe!


  2. Hi Matthew,

    I’m truly sorry for the pain and trauma you and your family have been going through. I was diagnosed with generalized morphea, which is a form of scleroderma although at this point it just effects the surface area so I am fortunate not to be in pain. It is extremely frustrating that so little is known about this disease.

    One thing that caught my interest though, was the documentary Fat Sick and Nearly Dead. Joe Cross explores how his rare auto-immune disease (not scleroderma) reacts to vegetable and fruit juice diet. He later includes plant based solid foods as well. His disease went into remission. His doctor took him off his meds as well.

    I wrote to his doctor – Dr. Joel Furhman – who unfortunately did not have experience with morphea but he did say he believed their protocol would help.

    I don’t know if this would be helpful to you, but it is certainly worth investigating.

    Best wishes,



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