You Know, Pain Won't Kill You

A friend of mine told me today that her doctor said to her "you know, pain won't kill you". Really? This is just the type of doctor that makes me want to scream or slap someone. We have multiple diseases, all of which come mightily equipped with torture devices to cause plenty of pain. We experience a kind of pain that you cannot even imagine on a daily basis.

My doctor wonders why I don't trust doctors. She can't understand why I hold back and don't always tell her just how much pain I'm actually in. Well, there it is. There's my reason. It's doctors like the one that made this comment that train those of us who suffer to suffer in silence.

We who suffer in silence often sit at home crying over excruciating pain that would send most normal, rational, people running to the nearest emergency room and collapsing. We shed our tears in dark, quiet rooms because the sound and light make it worse. We hide our pain in the raging madness that is our mind because society doesn't want to know that anyone suffers so.

I once had a doctor say to me that NOBODY should live in pain. With medical advancements and all the choices of medications that can be used, nobody should have to live a life of suffering. She was the best doctor I ever had mostly because she didn't believe in allowing someone to feel like they were dying only to have no end or hope in sight.

There have been days, weeks, months where my pain has been so severe that I wished it were terminal because at least that would provide an end! No, pain won't kill us, but how often we wish it would just get it over with already.

I thank the heavens for my current doctor too. There are things about her I don't like very much but I appreciate so much more about her than I dislike. She cares! She wants me to tell her when I hurt! And she understands it better than most do and she BELIEVES my pain is real. She sends me for testing and has discovered several other causes for my pain that most doctors would not have noticed because they dismiss chronic pain so readily, as if to say that how we feel doesn't matter.

It takes me forever to choose a doctor when we move because I feel I deserve a doctor who is willing to listen, believe and show some compassion. Terms I avoid when choosing a doctor:

• It's all in your head
• We don't do pain meds (because that means you don't care that I suffer or you don't believe me. either way this is unacceptable)
• Fibromyalgia is a catch all (it isn't. that is an antiquated belief)
• You are too young to be in that much pain (my age has nothing to do with my pain)

I'm sure there are others but these are definitely some pretty terrible ones. I've only had a couple of doctors pull the "It's all in your head" thing and then they try to backpedal and explain it off but that comment is usually enough to tell me that getting proper care will be a struggle.

"We don't do pain meds", in my mind, is code for 'I threw out my belief in do no harm and decided to go with treating everyone the same'. I don't like heavy medication and it actually does very little good for me. I have a very difficult time swallowing pills and don't enjoy having to take them. However, the minute you tell some doctors that you suffer from Fibromyalgia or any other chronic pain illness, you suddenly turn into a pill hound or druggie in their mind and that's it. There is no room for debate or discussion. Sorry, I want a doctor who cares about ME enough to try to work with me and keep my pain under control. If you don't care enough to do that then you are not going to gain my trust enough to tell you when other things are wrong. If you aren't going to talk to me about what kinds of medications have and haven't helped, or consider my UNIQUE medical history, then you are treating me like every other person who walks through your door. Medical relationships should each be personal and unique and there is a major element of trust within them, mutual trust if it is going to work properly. I currently suffer from several conditions that need monitoring but if I don't trust you to help me, then you can't.

"Fibromyalgia is a catch all". I So hate that one. Doctors used to believe that Fibromyalgia was diagnosed when nothing else could be. It was a 'catch all' for those with chronic pain but no medical explanation. This has been proven in more recent years to be incorrect. Fibromyalgia is in fact a real disease in and of itself. It consists of a set of symptoms that one can have many of or few of, just as with any disease. It is generally accompanied by certain other diseases that tag along like terrible friends. If a doctor calls it a catch all then they are not keeping up to date on their medical education and they are NOT going to be aware of new possibilities to help me. Again it's a matter of trust. How can I trust someone who thinks my disease isn't even real.

And the "you are too young". Ok that one gets pulled more than you'd think and has for many years. How old do I have to get before I stop being too young? And really what does my age have to do with the amount of pain my body gives me? This one I avoid more because it ticks me off than because of trust issues and I really hate to start a medical relationship off on that foot.

Oh and did you know that pain makes one very crabby sometimes. I am already irritable enough without any help most days. The more pain, the more I am likely to snap. Doctors need to understand that and make some effort to be compassionate. I am not looking for sympathy or pity but I would appreciate some mutual respect and understanding. You are my DOCTOR, that is a very personal relationship to me. I know you see a LOT of patients every day but I need you to be with ME when you are with me. I need you to see ME in front of you. I need you to listen to ME about what's going on. Don't talk at me, talk TO me. Don't treat me like the person who just irritated you in the last room, treat me like ME. If you need a two minute break before you come in, take it. I want you to be fresh and ready to change gears if need be. I am hurting and usually scared. You are the only person in my world who can alleviate that just by being kind and understanding. You are that person because you were trained to understand the signals and symptoms my body is throwing at me. I know how I feel but YOU are supposed to know what it means or be willing to find out.

Remember that as a patient I am hurting, sick, frightened and in need. I offer you trust and respect. I ask in return that you trust and respect me. I look to you for guidance and understanding. I look to you for a ray of hope when I feel hopeless and lost. Maybe that isn't fair but when a person is ill they have to trust their doctor. Are you going to be worthy of the trust that I must place in you in order to keep going? Do you even understand how important you are in my life? Do you even care?

Doctors I beg you to think before you speak. I ask you to see your patients as individuals with unique situations. Work together to create a trusting, symbiotic relationship. Only by working together, listening to one another, and trusting in each other can there be any hope of a chronic pain patient having some semblance of a normal life and really that's all we want in the long run.