I have seen and read a lot about the power of positivity and the importance of finding and maintaining a hopeful or optimistic view of life. I want to dig into that a bit, because I think that there’s an essential word missing from that suggestion: realistic.
Having unrealistic hopes is self-destructive, as you are putting mental and emotional energy into making it happen, and are likely to be disappointed when you fail to reach your goal. This can increase frustration and anger at yourself for ‘failing’ rather than any of the positive feelings you can create if your goals are more manageable and realistic.
It’s unrealistic to assume that after breaking your hip, you will emerge ‘as good as new’. It is realistic to expect that your pain will decrease as you heal post-surgery.
It is realistic to recognize that if you are able to correctly manage your food intake and be consistent about it, your early symptoms of diabetes may not progress into anything worse. Expecting to continue to eat the way you have and not get worse is unrealistic.
Along similar lines, there are a lot of phrases and statements out there that can be very damaging to those of us manging disabling conditions. Toxic positivity and inspiration porn are two of the worst and most insidious and I’d like to talk to you about them, so you know what to look out for and avoid.
Inspiration Porn: peak ablism that can’t help but damage those of us living with disabilities
Stella Young coined the term ‘inspiration porn’ in her TED talk – a vital concept to understand in disability circles, especially in regards to visible physical differences and disabilities.
Inspiration porn is one of the more common ways that people with disabilities have their stories shared with the public.
Cringe-worthy descriptions like’ wheelchair-bound’(instead of wheelchair user if appropriate), a focus on the combination of lack of ‘standard’ abilities and celebration of them being miraculously able to do ‘normal’ things encourage the readers to picture people with disabilities as ‘other or ‘less’.
When the articles or posts celebrate the person with the disability doing an absolutely normal thing or talks about the great or work or sacrifice made by people to give a disabled person some lesser form of a normal thing – it’s usually inspiration porn.
From stories of prom invitations for people with disabilities, celebrating the existence of a person with no special attributes other than their disability, there are a lot of stories and articles that make people with disabilities more palatable, objects of pity, or a feel-good story based on the presumed deficiency of the person with the disability.
All of these, to various degrees, ‘other’ the people with disabilities, and feel designed to make able-bodied people feel superior and better about themselves. In many cases, the person with the disabling condition is merely the vehicle for glorifying the non-disabled person who helped them. People with disabilities shouldn’t be subjected to this sort of treatment, but we are, and regularly.
Its something I want you to be aware of, and make your loved ones aware of , so that you can comfortably push back if somebody tries to put you in that victim position or share some images of how you’ve ‘overcome’ the terrible fate of your condition and now can do whatever behavior in a similar but lesser way than greater society.
I hate that this exists, but it does, and so much of media damages the self-image and perception of people with disabilities through this process – we deserve to be treated better.
The main thing you can do about it is when you recognize examples of inspiration porn, educate your friends and family about why and how this is unrealistic and damaging to the people involved. Most importantly, insulate yourself from expectations around you fitting those profiles because again, these presentations are generally almost parodies of the individual’s actual stories.
So what’s toxic positivity?
Toxic positivity is the denial of real and appropriate emotions in the face of competition or adversity, usually accompanied by an admonishment to ‘think positive’ and how that will make everything be okay again, regardless of reality.
Toxic positivity is the suggestion that you should always appear to have a positive attitude, no matter what, should always express positivity and joy, and that everything should be fine as long as you ‘think positive’, so stop complaining when things don’t work out.
Toxic positivity is the process of pushing a person towards a surface calm by hiding or denying all of your (very legitimate) fears, concerns, and anger at your situation.
Being told to cheer up or being told that ‘others have it worse than you’ or being told to smile are all aspects of toxic positivity.
Being told to think positive or the image that you will be ‘back to normal’ or ‘just fine’ soon if you will it to be is toxic, the more so the less based in reality those suggestions are.
Being told ‘it’s not that bad’ or ‘other people have it worse’ is a dismissal of your own very real pain and hurt, and has no place in your life. While it may in some cases be true, it helps no one.
Denying these things or encouraging you to look down on others for their conditions is another form of ablism and if you are being requested to compare your situation to theirs, it’s also likely a toxic situation.
Many people perpetuate toxic positivity without realizing what they are doing, many times as a form of ableism.
If somebody doesn’t understand what you have they really can’t be expected to know how your condition works or what are reasonable expectations for your management or recovery.
Toxic positivity can be applied to most disabilities and most situations, but are particularly common and hurtful in the case of invisible illnesses, especially mental health conditions.
While inspiration porn often objectifies a person based upon a visible and physical difference, toxic positivity tends to imply that the disability doesn’t exist in the first place, or is an exaggerated complaint by the sufferer.
For example, many people who struggle with depression get told to ‘smile more’ or that they need to be positive when that’s simply not how mental illness works.
Realistic Optimism: what is it and how does it work?
So now that we’ve talked about what isn’t helpful for those of us managing disabilities, what is the solution?
Your job is to protect yourself from these ideas and make sure that your understanding of your condition and your expectation for your management and recovery are based upon solid medical evidence, some of the information provided by peers with similar diagnoses and prognoses, and your personal experience with your condition.
The best answer is research and science-based understandings of our particular conditions, diagnoses(what’s wrong) and prognoses(what we can expect to happen in the medium to long term), and building up a set of beliefs and expectations based upon that information.
You need to take care of yourself and protect yourself from these sorts of negative impacts.
This is about finding and walking the middle path, where we recognize and respect the limitations we have(as opposed to the inspiration porn effect where anything we do is painted as miraculous, putting down our ability to have pride in our achievements), and create reasonable, objective goals that will allow us to have better quality lives.
My path to realistic optimism
Functional Neurological Disorder(FND) is, in my case, a chronic condition. I was diagnosed in 2003, have had symptoms and remissions likely dating back into my childhood, and haven’t had more than a few days at a time without symptoms since my diagnosis. That doesn’t mean that my treatment has always been the same, and it doesn’t mean that I have always been in equally bad shape.
Because FND is extremely stress- and trauma-responsive in my case(this isn’t true for everybody but it is for many people), the biggest influence on my FND symptoms has been the combination of the life stresses around me and my emotional response to those stresses.
My FND diagnosis was accompanied by my neurologist telling me that it was possible for my symptoms to decrease or possibly completely go away if I worked on managing my stress, identifying my triggers, and taking good care of myself.
Science backs this, as about ⅓ of FND cases can go into full remission, especially if they are able to resolve their traumas.
It would have been unrealistic for him to tell me that I couldn’t recover, just like it would be irresponsible for him to tell me that I definitely would be fine if I did x, y, or z.
When I participated in the MoRe treatment program a few years ago, they were upfront that I had a good chance of improvement, but neither they nor I expected me to emerge from the program ‘cured’, as I had had symptoms for such a long time. If I had gone into the program expecting a cure, I would have been disappointed for not getting it.
As it was, I went into the program and did improve dramatically, and was able to celebrate that, even though I was not completely symptom-free. My family was able to celebrate my marked improvement, rather than being disappointed that I wasn’t cured.
This said, I think that as a person experiencing a disabling condition, it’s vital to understand that false hope is unhealthy for you, but realistic expectations with a dash of optimism can create a huge improvement in your state of mind.
What this means for you as a patient is that it’s really important to focus on learning your true range of possible outcomes, and to be able to realistically assess what your options are.
If your doctor suggests a treatment, they may not be able to give you precise odds, but they should be able to give you a ballpark, and the extremes.
For example, participating in the MoRe program was guaranteed to have the financial costs of travel to and from Louisville, the time cost of a week’s commitment to the hospital stay and treatment regimen, the likelihood of some financial charges from the stay(after my insurance covered its share, and they allowed me to apply for some financial aid), and the risks involved in staying in a hospital and receiving physical therapy.
I was highly unlikely to suffer physically for participating, and I was not having any form of surgery or other risks. The risk I was facing was of the program not helping me, and all of that time and effort resulting in no improvements.
My attitude during the stay was an important piece because the effort involved was mine to make(or not), and the treatments they offered was in the form of guidance and discussion, not a physical intervention(mindset can affect the results of a surgery, but more in terms of ease of healing and risk of infections – the skill of the surgeon has a much greater effect – in the case of a therapeutic treatment, the skill of the therapist is very important, but the willingness of the patient has a much greater effect on the outcome).
In discussing experiences with the neurologist who ran it, she explained how she had had multiple patients decide not to participate due to fear of being treated like a mental patient, or a concern that the treatment program implied that they were mentally ill. There’s a very deep stigma on mental illness and it disturbs me that so many people feel that way.
The reality is that
- Mental health conditions are every bit as real, valid, and treatable as physical ones.
- the mind/brain behavior that is so often referenced simply isn’t how reality works.
- Our thoughts affect our bodies and our bodies affect our thoughts – it’s one whole internal interactive process.
I feel bad for the people who refused to go out to fear, and for those who have refused to consider the possibility of FND because they didn’t want to acknowledge the possibility of being accused of making it up. For example, episode 7 of Diagnosis on Netflix, based on the NYT series shows a woman who likely has FND refusing to see the correct expert out of fear of the mental health implications.
If I had entered the program expecting to be cured, I would have been disappointed. If I had gone in expecting it to be useless, it would have been very hard to achieve anything.
Instead, I focused on the fact that over 60% of patients reported significant improvement and focused on doing my best to be one of those. Was significant defined? No – but that meant that my PT’s and I defined it, by focusing on what I found the most limiting during my time there.
What did I find most limiting? That I couldn’t safely use stairs – my brain stopped warning me before I got symptomatic in a dangerous space(like a flight of stairs -it never warned me driving which is why I gave up on that pretty quickly). I did want to be able to use stairs again.
I also wanted to have a better shot at walking closer to normally. When my symptoms would hit(generally if I was under any form of stress), I simply didn’t walk forward. Instead, my legs would propel me in a generally forward direction with almost no reliable process to it. Sometimes a knee would stop bending and I’d drag it behind. Sometimes each foot would swing out and then wind up in front of the next(imagine young children walking while board and just swinging their legs out…like that).
Sometimes my knees would collapse, and sometimes my steps would kind of stutter, very small movements forward.
The key was that we didn’t try to stop the bad behavior, instead, we focused on me being able to find a center of calm when walking so that my legs would just work the way they were supposed to. It worked! I’d say that most days, no, I have almost no trouble walking, and on the rare occasions I do, I can usually get the control back with a pause and a breath. I’d call that great progress, and something well worth celebrating, even if I’m not ‘cured’.
I’m also no longer afraid of losing my ability to use steps. We drilled in climbing them in that same safer relaxed state of mind and retrained my legs to keep going while reminding my body that this was safe, normal, and not to be interrupted. I haven’t lost my legs on stairs since I participated in the program 3 years ago, even though I’d have some pretty severe additional stresses.
Conclusion: being realistically optimistic helps you live the best life you can
There are a lot of points in your life to apply realistic optimism, and disability and health management is just one of many. It’s about focusing on improvement, not perfection,
And on targeting the better outcome, not necessarily the ideal. A graduate school instructor of mine shared the idea with me: don’t let the perfect be the enemy of the good. Perfection is nearly impossible to achieve, and being disappointed that perfection isn’t reached is an easy road to dissatisfaction.
I’m also not saying that you should expect to be trapped by your condition and unable to make any improvements, or that you shouldn’t try to get better. I’m saying that there’s a balance, and if you go too far down either path, you can only be disappointed.
Your mission, should you choose to accept it, is to find an achievable path that can allow you to be happy with your progress, proud of yourself, and hopeful for your future.