There’s an ever-present subconscious belief in US culture that if you just try hard enough, you can accomplish whatever you desire. “Pull yourself up by your boot-straps”, “If you can think it, you can do it!”, “Positive thinking yields positive results!”, etc. Just google “positive thinking quotes”, and you’ll see what I mean.
The problem is, what happens when all the positive thinking in the world doesn’t work? What happens when positive thinking fails? What happens when people are forced to confront the reality that positive thinking can’t cure all?
We very much want to believe we are in control of our lives and our health. We want to believe that if we do the “right things”, that we’ll always be healthy. Yet this is simply not the case. People with chronic health conditions force us to confront the reality that we are NOT in control of our lives and our health; and when people with chronic health conditions try to talk about what they’re going through–whether to doctors, family members, teachers, bosses, friends–the response is often one of disbelief, sometimes at a subconscious level that ends up being expressed in replies like, “Well, have you tried working out/cutting out gluten/smiling more?”
In preparation for writing this post, I asked friends to comment their answers to this question:
“Why is ‘I believe you’ one of the most important things for disabled people to hear?”
What follows are the experiences people chose to share with me.
(Note: trigger warning for abuse/gaslighting.)
“I hate being compared to other people with fibromyalgia, especially by other fibromates, some of whom themselves have the surprising misconception that there is a one-size-fits-all way to manage symptoms–that because something works for them to feel better, it should work for everybody with fibromyalgia. ‘Your problem is that you’re not getting out and moving, you need to swim or walk, like I do, that makes me feel a lot better’. Don’t you think that if I could swim or go for walks, I would be out doing that? Sometimes I have questioned myself about whether or not I’m just malingering, or wonder what’s wrong with me that what works for them doesn’t work for me.”
“Because when one is able to adapt to one’s disabilities and be athletic and do exciting things, it really hurts that all one’s experimenting and effort and successes are not merely dismissed, but used as evidence that there’s nothing wrong in the first place. My neurologist simply refuses to acknowledge any abnormal test results and insists that my symptoms don’t really exist because I reported having run eleven miles without causing injury. This made it into their notes as ‘without effort’.
Because the months of developing a hydration/electrolyte regimen to help with orthostatic intolerance and ear problems, the months of developing bathroom routines to enable physical activity without abdominal pain or other complications, the experimenting with tape and shoes and compression and speed and form to manage neuropathy and reduce injury from gait problems all meant nothing. They assumed that because I did it, and also complain of pain and weakness, I did it without difficulty. They not only told me I don’t do difficult things, the also told me I’m not entitled to medical care until I lose all athletic ability.
At which they will probably tell me to ‘just go for a walk/do yoga, you’ll feel better’.”
“Here’s how it goes:
I express emotion;
Someone doesn’t like what I say;
They point at my emotional behavior as a sign that I’m wrong about whatever I’m upset about.
But if I stay quiet and never speak, and never show my emotions, my mental illness will get worse, and I may hurt or kill myself.
I also think society gaslights sick folks, in general, with all of the positivity culture. I sometimes actually think, ‘Ok, I’m going to choose to be well today, surely if I just get up and get moving, this will all go away.’ Well, it always fails, of course, usually about 5 minutes into it, but why would I even think that I could choose to get up and live when that’s all i ever wanted, but can’t have because of the pain. But I think, sometimes, what if this IS all in my head?
Well, it IS all in my head, cuz brain and stuff, but everything is in our heads, isn’t it?
I’ve had 2 rheumies [rheumatologists] who’ve blamed my joint pain on my weight. I asked them to please look at my records to see that when I was [diagnosed] with [Rheumatoid Arthritis], and when the onset happened, I was slim and fit. But they insist that if I just..lose…weight… I’d be better. So I’ve doubted my own pain, even though I know full well, logically, that this has been going on since way way before I gained weight, and that I gained weight due to my illness, not the other way around. The last one told me, on my first visit, ‘I believe you,’ and I cried. It’s so rare to hear that from a doctor, and he seemed to at least understand that I needed to hear that. He dumped me when the first med wouldn’t work and told me I just needed to lose weight and go to therapy. When I told him I’ve been doing therapy for over 30 yrs, he just said, ‘Keep going,’ and winked and smiled. And, as a result, I just can’t see myself going to another specialist.”
“[I went] to a prominent rheumatologist and [was told] that most young women with joint pain and fatigue are suffering PTSD from sexual trauma. It was definitely one of the most horrible days of my life. When I finally got up the courage to go to another rheumatologist and she accepted my symptoms at face value, ran tests and xrays, and diagnosed me conclusively 2 weeks later, it was amazing how, just like you’re saying, the act of someone simply saying “I believe you” changed my world.”
“I’ve grown up with disability and am now in my 30s. A family member honestly believed my health issues were caused by my mom having Munchausen by proxy and brainwashing me to believe I was sick when I wasn’t (neither of which were true). He shared his theory with doctors, teachers, everyone who would listen, including me. After years of hearing this, I have trouble accepting my own perceptions as reality. I doubt every time I need to see a doctor about whether I’m exaggerating or making it up. I feel anxious and threatened whenever someone says something to me that could be construed as questioning my health issues. I want to flee and I shut down emotionally. I have worked hard as an adult to find the confidence to accept my health issues and trust my own judgment. Saying ‘I believe you’ is an affirmation that I exist, that I as a disabled person exist and that you acknowledge my reality as real. I can’t over-state how important this is to me. Sometimes I even say it to myself, because in all this, the person whose belief I need most now is my own.”
“I started experiencing chronic pain after a running accident at age 12, but wasn’t diagnosed until age 23 – I spent 11 years, including three years during which I was borderline anorexic, which didn’t help. I met my future husband, whose family immediately disapproved of me on many levels, of which my chronic pain was one. He stuck by me through the process of getting my diagnosis, which happened around the time we got engaged. His parents disapproved of him marrying me on many grounds and the disability was one – in particular, they didn’t believe it was real. They have tried, over the years, to actively undermine our marriage, using my disability against me and against him. Fortunately I married an amazing man who has stuck by me on this front, but it’s been hard for him to stand up to that for, now, 20 straight years. It’s hard enough maintaining a marriage when one is disabled. When people try to make it harder, it’s terrifying, because I don’t know what I would do if he left me.”
My mom is a drama-mimic. If you’re sick she’s sick. If you’re about to lose a place she’s about to lose her place. A lot of emotional manipulation based on claiming fake problems. (I can give solid examples of things she’s lied about to clarify between invisible disability and what she claimed later). So I push myself way past my limits and end in agony, confused, and sick in order to avoid risking the perception that I was just being like my mom. When someone says “I believe you” it gives me space to do less, to rest, to breathe, and, most of all, to feel safe.
“It’s important for me because even my friends make statements like ‘Oh it must be nice not to have to work’. And I still get dirty looks and handwritten notes on my windshield telling me I’m not disabled if I use my handicap placard. I constantly have to reassure myself that I am disabled even if I don’t look it. I struggle with feeling like maybe I’m just lazy.”
“I have migraine, which is an inherited neurological disease. Some years ago I went through a period of escalating symptoms which culminated in a migraine that lasted for six weeks. Because my neurologist at the time believed me about my experience of my body–being in status migrainosis, having a life-threatening reaction to a gold standard medication for menstrual-related migraine, and more–and about how bad my quality of life had become, he was able to help save my life. He was a good partner in my care. My doctors here have never once told me “There’s nothing wrong with you.” They have on many occasions told me “We haven’t figured this out yet, but here’s what we know so far.”
In the past, I’ve had doctors say to me, when the tests came back normal or they couldn’t figure out what was going on, that nothing was wrong with me.
Being believed makes a HUGE difference.”
This disbelief and questioning of our experiences can be a kind of abuse called gas-lighting:
“Gaslighting or gas–lighting is a form of mental abuse in which information is twisted or spun, selectively omitted to favor the abuser, or false information is presented with the intent of making victims doubt their own memory, perception, and sanity.”
It’s important for disabled people and for people with chronic health conditions to know that, when we tell you about our health issues, that you believe and accept what we say as unconditionally true; that you don’t assume we must be exaggerating somehow because things can’t really be that bad; that you don’t compare us to other people with similar conditions who seem “better off”; that you don’t try to fix us (unless you’re our doctor or we explicity ASK for your advice).
“I believe you” tells us that you trust our perceptions and ability to accurately understand our reality. It tells us that you respect that even though our experiences may be completely different than yours, that you accept our experiences as real. It tells us that you respect us.
These three words can have a profound impact on our lives. Please say them–and mean them.