You are not suffering enough

“You are just not suffering enough.”

That was something that I was not prepared to hear. I knew what he meant. I’ve been walking 3 miles a day. I am taking advil only occasionally, hydrocodone less than that, I am functioning at a high level. I am not “suffering” enough. It is not enough that I cannot roll over in bed without pain that makes me gasp and wakes me up from a dead sleep. It is not enough that I cannot move my leg into certain positions without assistance. It is not enough that I cannot get on and off the toilet without bracing myself for the pain that I experience. It is not enough that I do have pain every, single. day. And that the pain that I experience will never improve until they remove the necrotic bone from my body and replace it with titanium.

The risk of infection, clot, increased immobility, unforeseen complication…. I could potentially suffer more if he risked the operation. I was not suffering enough to risk it.

But that’s not the way it sounded.

I didn’t realize how that particular choice of words would affect me. Have I not suffered enough? Lost my spleen, been hospitalized for months, immobile for many more, not eaten for 6 weeks because of the pain and nausea, been through chemo, wanted to kill myself, howled in despair, lost my hair, lost a hip, lost a shoulder, lost years of my life, been poked, prodded, cut on, put through tortuous tests, watched my body wither away, watched my family watch me…. which part of this was not enough?

I face the fact that I more than likely will not live as long… that I may not get to see my children grow and their children grow. That my future is weighted with potential complications that I have not even dreamed yet. And yes, what is a simple surgery for many, may not be for me. Is that not some form of suffering?

What I wanted when I entered that office that day was to learn his confidence in dealing with a person like me.

“I can do it if you needed it. But right now, I don’t feel that you do.”

After much contemplation of the conversation, what I realized is that his lack of confidence was greater than my suffering. So yes, my suffering was not enough. And that’s ok. Really it is. Now I know. I’m sorry that it did not initially come across that way to me. But I am not sorry that I asked. And I am no longer sad about what you told me. I appreciate your honesty.

I didn’t write this to vent or judge or blame what was said. It doesn’t really matter. What I wanted you my reader to know is…. that I’ve been there.

I’ve heard the words that offer no comfort.

“You just need to have more will power.”

“Don’t worry about getting pregnant, it will happen when it’s suppose to.”

“You just have bad genes. Your mother/father/sister/brother had problems just like this. You were bound to also. There’s nothing you can do.”

“This fatigue/mood/constipation/weight issue/pain/skin issue is normal considering what you’ve been through/what you’re going through.”

And I’m here to tell you…

There is a solution.

There are people who have things to offer that could help. And I am one of those people. I not only have 20 years of experience in health care, I have 4 pretty solid years as professional patient. I can guide you. And together we will tackle your problem(s) together.

Because you have suffered enough.