The journey we’ve been on has been interesting to say the least.
There is however, an aspect of our journey that’s been difficult to articulate and more importantly, difficult to carry. Deeply personal, these interactions have framed my perspective as a patient and influenced my point of view as an advocate.
The absolute worst part of our journey has been the wrecking balls of unsolicited recommendations and opinions. Ranging from benign to more wounding and callous, we’ve taken a full on assault from so many people over the past few years that often the words have been worse than the diagnosis itself.
I’ve learned to put up walls and grow thick skin to protect myself and have managed to turn these interactions into an experience to grow and learn from. I hope in sharing some of our dismal experiences and what was so wrong, I can show what can be so right.
In the end it’s pretty simple.
Stop and listen to what’s being conveyed to you and respect that everyone has different needs, different perspectives, different goals and different risk tolerances.
Aside from Physicians and those who Paul and I chose to solicit information and counsel from, we never asked anyone where I should go for medical care and never asked anyone what Doctor I should see. We never asked anyone what their opinion was. Over and over, I was told “You need to… You must go to… You have to go to… The only place you should go is… Why would you not go to… Why didn’t you go to… Do what you think is right, but you should go to…”
Aside from Physicians we never asked anyone what course of treatment I should have. Yet, again, the opinions came flying. “Are you sure you are comfortable with… You should get another opinion… I would never do that… Having surgery would be a last resort if you asked me… Of course your Doctor suggested surgery, that’s all they care about… I hope you get the results you’re looking for since I wouldn’t do… You don’t know what you’re doing…”.
These statements and questions came from strangers, from people I had just met and from people I had once called friend. In the end, it really doesn’t matter to me whose mouth they came from. Each word and each experience stole away pieces of my confidence and left me questioning even when I knew I shouldn’t.
As much as I wanted to defend myself, more often than not I would simply nod, excuse myself and cry in private. Then the self-doubt and insecurity about everything and anything I believed to be true about my healthcare and my course of treatment would bubble up and these experiences would leave me feeling anything but empowered as a patient.
I have no magical advice or perfectly packaged information to share. I only know what I’ve experienced, how it’s made me feel and how I know it should have been so different. I wish I had the courage to say all of this to each person who had recommendations or opinions.
I wish I had the courage to say…
Simply listen to me. Listen to what I am saying. Take a moment to set aside what your feelings and opinions are, take mine in and respect them. Hear me when I say ‘What I am doing’, and respect that it means I am not asking you to tell me ‘What you would do’. Please ask me questions, but respect my answers and respect my perspective. Ask me if I want your opinion before you besiege be with yours. Ask me why, but not because you want to challenge me.
As entirely challenging as it is, consider for a moment what my life, this experience, this diagnosis and the choices we’ve had to make have been like. Then, for a moment consider how, in that vulnerable and tenuous place, you’d like to be treated and how you would like your interactions to be like.
The most painful part of living with disease and being a patient shouldn’t be the interactions we have with each other. Listen to what patients say. Listen to our words, how we feel and what we are trying to express. Respect our positions and our individual perspectives and maybe eventually our interactions will be healing rather than hurtful and eventually be occasions to draw strength from rather than moments to run from.
GREY MATTER LIFE 
Hi, Jen….Bravo for you!!! I couldn’t agree with you more. Well-meaning friends will continue to give their opinion regardless of the severity of the situation…from having them meet a new love interest and just sharing an idea of a possible new large purchase or dealing with a serious health issue like you are. Yes, they mean well…but some are more obnoxious than others and it is difficult to respond in a nice way and still let them know their advice is not wanted. My former sister-in-law used to just say, “thanks, that’s a good idea”….and just let it go at that. I try to do that, but in the heat of the moment I ususally don’t remembmer…so I just get pissed! ha
Love you, my dear….hang in there. My thoughts and prayers are with you and remember, you are a wonderful woman warrior….beautiful in every sense.
Oh…BTW…if your mom doesn’t give you ‘the tank’ picture, she should be flogged! 🙂
This makes me think of the time a good friend of ours told me his father was able to beat cancer simply because of his amazingly positive attitude. He said that was the key to beating cancer. Mind you, this was said to me within weeks of my brother’s passing. So, gee, let me get this straight dear friend . . . my brother died because apparently he had a shitty attitude. Oh dear, why oh why did you not tell me this gem sooner. We could have saved him!
My take . . . some people are just stupid and while they may mean well, they have no idea the things coming out of their mouths are just plain hurtful.
As one who probably fell into this category more times than I am pleased to admit, I would like to say that fear brings out the worst in us. I know now, that it was my fear of the unknown, feelings of helplessness and having an intense belief and faith that someone somewhere could make this all better. I pushed and pushed (at the time I think I chose to use the word “encourage”) for Charles to seek other opinions, to scour the country for new treatments, new trials, a new doctor…anything that might change the outcome. I was devastated when he refused and was content to be here, at home; in the hospital where he had been treated since he was ten years old (he was 31 at the time).
How silly of me? It took him telling me that he just wanted to be where he felt safe and comfortable, for me to realize how my words and actions were affecting him. He was smarter and stronger than I and fortunately, once he realized that I was coming from a place of fear and love, he was able to explain to me why he made the decisions he made. His mind was made up! And, for the first time in almost two years, I finally got it. I was afraid for him to die, afraid to lose my brother and best friend. I guess this is when I made the decision to push my fears aside and to continue the remainder of his journey by his side, with peace in our hearts.
I guess I am attempting to apologize for those who would like to, but may never find the strength to do so. While I can only speak for myself, I have a sneaky suspicion (right or wrong) that fear plays a huge role in these remarks that torment you. As always you have done a beautiful job expressing yourself and how others’ remarks and comments (however good intentioned) affect you…how hard that must be for you. I’m proud of you for your strength and courage to share those feelings with us…thank you!
with love and respect
xo
beth
“Stumbled” across your blog and wanted to say I pray God may bless you. You’re a brave, wonderful soul. I cannot image what you’re going through. Keep writing!
Thank you for your kind thoughts and words.
You are brilliant and brave.