This past week I had my first consult with my GI doctor since my ulcerative colitis diagnosis over a month ago. I'm pretty angry I had to wait so long to talk to a professional about this disease or get on a treatment plan, but I could tell right away that I had lucked out and gotten a doctor who knew her shit.
I knew because she started by apologizing for the long wait. That let me know that she must have a ton of patience. She has had enough practice to know that this was going to be my first frustration and the place where we should start.
The consult felt scripted but in the best way possible. She knew exactly what I need to hear. She explains how they knew for sure this was what I had. She explained what my treatment would be. She told me we were a team. I needed to talk to her and seek help when I need it. Then, she took the time to drill into me exactly how serious it was and what I needed to do.
I was not to stop treatment. If I did, I could get worse, and the same treatment might work if I tried to go back. I was not to lose my health insurance. I am on the easiest and most affordable level of treatment now. If I ever have to move to injection or infusions, I would not be able to afford it on my own. I was not to listen to people online who told me that this could be controlled through diet, supplements, or pure positive thinking. That will lead to me stopping treatment and down the path to more expensive and more life impacting/inconvenient plans.
She told me that if there were such a cure, she would give it to me. They are working on one, she assured me, but for now, and maybe for the rest of my life there would be this disease, treatment, tests, and if everything went well more happy days than not.
It was a good visit. Not because I walked away thinking everything was going to be okay, but because I knew there was going to be a struggle, some trial and error, and maybe some disappointment too but I had a teammate who knew what to do next. I had a plan!
“There is a vast difference between positive thinking and existential courage.”
― Barbara Ehrenreich
Before I could get in to see a doctor, after my diagnosis that is, I relied on a few Facebook groups to for information, hope, laughter, and a sense of what my future would look like. I'm new to living with a chronic illness, but already I can see the danger in these communities. The cult, the plague, of positivity resulting in bad advice, false hope, and more suffering.
After hearing my that there was no easy cure, I become sensitive to posts by people who claimed to be living symptom-free simply by working out, eating right, and thinking good thoughts. In the comments, there were others desperate to know how they could do it too. They were smiling, exercising, meditating, eating crazy diets and cleansing and still they were sick. They wanted to know what more they could do.
I believe my doctor was telling me the truth when she said there was no easy cure. I am thankful she said it and in just the way that she did because I can see the danger and the deception in these one-off anecdotal stories. I feel inoculated against them now. I felt safe from myself, from putting my body in danger simply because I don't want to believe that I am sick and that I need pills and help from others to be well.
I know what my future is. I have no delusions, and I am better for it. I told them what I was told, that it's not so easy but that it's okay. There can be hope, and happiness, and medicine together. There can be gratitude and anger, courage and the impulse to give up, all at once too.
Another member, who had clearly been dealing with this disease, this group, and this type of crap had had enough. He started his own post with scientific sources pointing to information on what happens when treatment is abandoned. He encouraged other members to comment and share their stories of going off their medication and regretting it later. I read every one of them. I turned on notifications for comments as a reminder that for every one person out there who swears that good vibes cure everything there are hundreds more who get worse because they fell for a lie.
We oush this type of thinking we do to each other what we hate for those on the outside to do to us. We put the blame on ourselves for our condition. When you say, "think positive," "don't let the disease win," "fight back," you make those of us who are too sick to fight, too sick to think positive, and too sick to consider giving up treatment feel like we are weak. You make us feel like this is our fault. You put us in danger, and you should fucking know better.
“The failure to think positively can weigh on a cancer patient like a second disease.”
― Barbara Ehrenreich
Staying positive is good. Fighting back is good. Starting every day with the intention of doing your best and being your best is good, but you are only human, and you cannot control everything with your mind. You need help. You need to feel. You need to be smarter than that. You need to look at the bigger picture.
I have always believed that suppressing emotion and thought leads to the opposite result you are trying to achieve. In the case of chronic illness, repressing your grief, disappointment, and anger to achieve health through perpetual positivity leads to more physical and emotional damage. To tell yourself you can only think one way or feel one way is to put yourself in a prison. To tell yourself that doing this is what makes you a better human than those who don't is a to live a lie. To tell yourself this is self-destruction.
“In other words, it requires deliberate self-deception, including a constant effort to repress or block out unpleasant possibilities and 'negative' thoughts. The truly self-confident, or those who have in some way made their peace with the world and their destiny within it, do not need to expend effort censoring or otherwise controlling their thoughts.”
― Barbara Ehrenreich
What is best for humans is to be humans. Humans feel things, a lot of things, and we feel them for a reason. Stop telling yourself that your problems are the result of not thinking positively enough. Stop telling yourself that good vibes and smiles can cure everything. It just isn't true. Not for everyone, and in the long run, probably not for you either. Worse it hurts. It hurts to buy into a belief system that puts the blame for things like cancer, auto-immune disorders, strokes, and heart disease, etc., squarely on the ability of the person already suffering to ignore their own pain and heartache.
Please, remember that what works for you might not work for others. Please, be aware that what works for you might not work forever. Please, understand that what you think is working for you might not be entirely healthy or good for you either. Positivity is not the secret cure for all your ills. It is a place to hide when you are afraid, unsure, or short on hope. Recognize it for what it is, then exchange it for deeper thinking, research, and planning. Add a healthy dose of acceptance and courage in the face of reality. Take a closer look what you are neglecting and suppressing in yourself and what you are trying to force others to neglect and suppress, and ask yourself why.
I'm not asking you to go on suffering and wallowing; I'm only asking you to think critically, take real care of yourself, or, if you can't do that, let others alone so they can do it for themselves.
“I do not write this in a spirit of sourness or personal disappointment of any kind, nor do I have any romantic attachment to suffering as a source of insight or virtue. On the contrary, I would like to see more smiles, more laughter, more hugs, more happiness and, better yet, joy. In my own vision of utopia, there is not only more comfort, and security for everyone — better jobs, health care, and so forth — there are also more parties, festivities, and opportunities for dancing in the streets. Once our basic material needs are met — in my utopia, anyway — life becomes a perpetual celebration in which everyone has a talent to contribute. But we cannot levitate ourselves into that blessed condition by wishing it. We need to brace ourselves for a struggle against terrifying obstacles, both of our own making and imposed by the natural world. And the first step is to recover from the mass delusion that is positive thinking.”
― Barbara Ehrenreich
P.S. The quotes included in this letter come from Ehrenreich's book Bright-sided: How the Relentless Promotion of Positive Thinking Has Undermined America. I've added it to my TBR, and I'm positive you should do the same.
P.S.S. This one was a bit rushed. I apologize and promise to start getting these out in a more timely manner.
“No one warns you about the amount of mourning in growth.”
— Té V. Smith // Releasing & Receiving