When I had been sick seven and half years, I’d been given 5 different diagnosis. I’d seen more than 16 different specialists in all kinds of areas (GI, Cardio, Rheum, Internal, EMT, neurologist etc. etc.). Finally, my husband and I got on a plane, traveled across the country to a doctor who finally gave me the diagnosis of ME/CFS. All of my previous diagnosis either mimicked or were a part of ME/CFS.
However, it wasn’t until 10 years after getting sick that I finally saw an immune specialist who could not only tell me what I had, but could show me the evidence on my lab work!
But even now, almost 12 years of being sick, no one in the world can answer why ME/CFS patients have low Natural Killer cell count and function. No on can answer why the immune system is so off kilter. No one can explain why ME/CFS patients are the only ones whose cells can function on the first day of an exercise test, but can’t function on the second day!
I recently had a friend ask me “Why do you travel to see doctors if they don’t even help you?”
It was a blunt question. A question that hurt my heart. But I realized many of us face these kind of questions from friends and family – whether blunt, or insinuated.
When the question was asked, I had several choices. I could A) respond with emotion B) defend myself or C) address the core issues of what was prompting this question.
Choice A leads me to a lot of places that are not healthy for me. I could be sarcastic or mean back. Or I could hang my head with hurt, shame or disappointment in my friend. I could go off and have a good cry and think about all the things I’ve lost. Or I could get angry because my life has been taken away and no one understands what my life is like now.
These are all of my first reactions. But not one of these responses does me any good. They all bring me down, make me a mean and nasty person, loose me a friend and leave me in despair. And, they certainly do not help my friend understand my illness and situation, nor does it help her grow in having compassion for me or others in my situation. I want what is best, both for me AND for my friend.
Choice B is my next reaction. I am (or I used to be when I could think well) a very logical person. Yes, I am also an artist and quite emotional, but, when needed, I can usually choose to switch to logic and rely on it instead of my emotion. So, if I’m not going to choose the emotional response, I quickly start making my list of logical reasons that this is an unfair question. I begin defending myself.
Now, at face value, this seems that it might do me good. I’m standing up for my decisions. I’m defending my choices. I’m showing her what is what and who is who! And yet, the truth is, when I walk away from that conversation, I realize I was trying to convince myself as much as I was the other person. I start rethinking all my arguments and I become very insecure in the very fact that I had to defend myself. It makes me angry. Angry is not a good place to be.
It might do my friend a bit of good, if I had valid points that she listens to. But more likely, if she had good intentions, I hurt her feelings back. Revenge? No, that’s not a healthy place for me to be either. If she was truly being critical, than she will just walk away angry too. I’ve lost a friend, and we are both in a bad place.
Choice C is the only choice that leaves me in a healthy place and also gives her a shot at a better place too. So, what are some of the possible core issues that caused this question to arise?
Well, first of all, we have made science our God. Science must know everything. If you don’t understand something, the scientists will figure it out. And if it can’t be proven by science, it must not exist. So, one reason this question might be posed is out of an incorrect belief that every illness is understood and can be treated.
Secondly, we put way to much faith in doctors. They know everything there is to know, don’t they? I mean… if it is a verified illness, your doctor might not know how to treat it, but they’ve at least heard of it haven’t they? Well, actually, NO! They don’t, and they haven’t. So how is a doctor going to listen to my symptoms and send me to the right specialist to treat me if he/she has never heard of this illness?
Most people don’t understand that there are illness out there that can take years and years and years just to get the right diagnosis. And we don’t want to think about the possibility that there could be illnesses that no one knows how to treat.
The third thing I thought might have prompted this question is that most of us do not like to face that there are illnesses that are not yet curable. I’m not saying that we don’t know this fact, just that we don’t want to face this fact. It scares us!
It’s really difficult to think about the possibility that we, or someone we love, might have to face a lifetime of suffering. We want there to be a cure. That’s why football players wear pink in October. That’s why so much money and research has been put into the AIDS epidemic. That’s why there are colored awareness ribbons in every color of the rainbow.
But this year, I have had to face the truth that there is not a cure out there for me. And if there is not a cure, then I have to learn to live the very best life I can with this illness!
From my friends perspective, she wonders why I’m not getting better. From my perspective, I have gotten better. I am better at understanding and managing my symptoms. I am better at staying positive and joyful. I am better at being patient through the hard days and making the best of the better days.
So what did I answer my friend?
I told her there aren’t any doctors who know and understand my illness in my part of the country. And I told her that the doctors I travel to see, help me manage my symptoms the best I can.
It’s as simple as that and I left it there. I hope I helped my friend. I know I helped me.