Have you ever had banana cream pie? Creamy delicious bananas sewn in vanilla pudding and topped which homemade whipped cream…ahhhh, so delicious. Well actually, I’ve never eaten it, but I’ve read the recipe and have seen pictures of it, and I’ve heard it is amazing! And when made from scratch – simply out of this world! Obviously, if I know what the ingredients look like, I must be able to imagine what this delectable recipe tastes like without having tasted it myself…right?
Forgive my humor from above, but this is what it feels like seeing doctors sometimes, or reading MS publications, or searching online for symptom information and symptom management tools. It’s like reading a recipe of a dish never tasted by the chef. All brain, no heart.
I’m not suggesting there is no place for that type of data, but where is the other side of the platter? I am grateful for knowledge, but at times I am so desperate to hear from someone who has actually tasted the plate I’ve been served, and not merely talk about what it looks like or what it probably tastes like and what may help and what may make things worse.
I feel particularly critical of websites, publications and organizations that appear to specialize in healthcare and illness. Why must each explanation of symptoms and symptom management contain a recipe from someone who has never made it themselves and has a completely different set of ingredients? Or, in the rare event they have tasted disease, they leave out so much of the “meat”, and sugar-coat it just to make it palatable! Most of the ingredients of disease and chronic illness are unpleasant, but truth from one who has learned to live a full life despite those unpleasant ingredients, goes a lot further than colorful lies sewn to make it seem easier to digest than it is.
I remember years ago when I started experiencing major leg weakness, I silently suffered while I deeply desired to learn if my specific experiences were “normal” and were simply “par for the course”. So hungry for understanding, I shamefully explained these confusing symptoms to an acquaintance of mine who also has MS. Describing in detail what I was experiencing and how it affected my mobility, I explained, “After a short distance my legs start buckling, my feet won’t pick themselves up in a coordinated manner, and the more I push myself, the weakness in my legs make it almost impossible to remain upright, and I either have to sit and rest, or trip and fall. After a little rest, I usually can walk again.” She very matter-of-factly nodded and answered, “Yep, I go through that too, you just gotta let em rest for a bit and try walking again.” This is what I need, knowledge and wisdom from others, based on actual experience.
Earlier this week, I took part in a research study where I was asked to give my opinion on how helpful or unhelpful the plethora of resources available to me are in giving me the information I need to make decisions for my health. In other words, based on my experiences with medical experts and tools, such as testing and blood work, as well as various websites, how helpful are these tools? Quite plainly, I answered them that all of the information is overwhelming. I don’t understand most of it, and rarely do I expect to get an explanation. I’m quite comfortable trusting my doctor to be the doctor, and I will be the patient. But, I believe there is something missing in healthcare. As I drown in a sea of information with a disease and symptoms I hardly understand, my life raft comes in the form of a simple, “Let me draw you a picture of exactly what’s causing your nerves to react that way.” or, “That’s tough, I don’t exactly know what that feels like, but this is what I’ve found helps me/others in similar situations.” and maybe just, “I don’t know, but I hear you.”
Information from experts is crucial, don’t get me wrong, but my opinion is this: serve your information dish humbly, as you likely have no idea what it tastes like, and leave it to me to judge the flavor or what it might need, because unfortunately, I’ve tasted it.