Since you can’t rid yourself of your disability, fight to manage it so that it affects your life as little as possible. Don’t take pride in looking normal, but in how well you cope with abnormality, tolerate the burden of your illness, and get as much as you can out of life. Living with a disability is in itself a marathon, not a sprint, so take pride in the small accomplishments that make up your every day.
Here are signs that your disability is getting the better of you:
• No one knows you have it, and if you can help it, no one will
• You’re afraid of what will happen if it gets worse and you’re not prepared
• You can’t imagine feeling good if you don’t look and act normal
• You can’t imagine telling anyone about your disability unless you’re very sure of their support
Among the wishes people express when they feel stigmatized by disability:
• To be in control and look normal
• To not rely on medication and never go in the hospital again
• To avoid losing control
• To maintain performance in all areas of their lives
• To find treatment that will give them the above
Here are three examples:
I don’t want to tell anyone at work that the doctors think I’m bipolar because it would freak them out. I’m not even sure lithium is necessary anymore, because it’s been a long time since I was sick, and I know that people would think I was crazy if they knew I was on it. I’m not sure I know what bipolar means and I know the diagnosis spooks people. My goal is to keep quiet about the illness, gradually get off meds, and see if I can be normal.
I feel embarrassed going out after work and always being the designated driver who never drinks. They know I’m sober because I believe I’m an alcoholic and sometimes they make sly jokes about it. I’ve been sober for three years, I don’t feel like drinking, but I know I’d feel a lot more confident if I had an occasional drink. My goal is to get my confidence back and try to be a normal person instead of an alcoholic.
I look pretty well put together and I’m attractive, so I get asked out a lot, but I can never feel comfortable with guys. I was abused by my uncle, and it’s left me with tons of anxiety about guys and sex. I’m ashamed to talk about it because it makes me cry and I feel like a head case. My goal is to straighten myself out so I can date and have sex and lead a normal life.
Of the many twelve-step aphorisms we like to borrow in this book, “you’re only as sick as your secrets” seems most apt in this instance, or maybe something more like “you’re only as handicapped as your hidden issues.”
It’s human nature to want to hide your disabilities so you can protect your confidence, pretend you can count on steady performance, and prevent others from knowing or exploiting your weaknesses. Playing pretend, while fun for children and kinky adults, is usually self-destructive in everyday life.
Since hiding or undertreating a disability usually makes it worse, your job is to accept it, regardless of embarrassment or self-disappointment. That’s the only way to become realistic at assessing its impact on your life, one day at a time, and become expert at managing it. Learn when you need extra rest and when to tolerate the risks of treatment, then educate your boss and family about your problem so that they know how to help and understand your periods of relative dysfunction.
It’s true, some people may not accept your disability—especially if you don’t—and thus hold you responsible for underperforming; they’re the ones who will believe you’re lazy, exaggerating, or bothered by mental issues (and they don’t mean illness). As much as their opinion may matter to you, don’t waste time and energy hiding from their scrutiny or trying to change their opinion. Stand by what you’ve learned from your own experience, which is that your disability is real, you’re doing your best with it, and you don’t want to argue or spend too much time with anyone who doesn’t agree. The people who matter can forget about your handicap, and the people who don’t can go fuck themselves.
Yes, you may have to find another job or limit the acceptable topics you can discuss with a family member. The alternative, however, is worse, which is that you’re constantly hiding, explaining, and apologizing, all of which interferes with your ability to manage disability and respect yourself.
People can’t respect you for how you are managing your disability or help you deal with it until they know what it is, so if you don’t tell them, they’ll wonder what they’re doing wrong or why they can’t help you, and your fear and shame will infect them. Letting them know what’s wrong is never a confession; it’s a proud statement of achievement and intention, and if they care about you, they’ll have your back.
As usual, the self-respect that comes from believing you’re normal and can expect to stay so is a fragile illusion. Instead, build self-respect on accepting your abnormality and knowing you’re competent to make good decisions about it, regardless of what others think or how severely it limits you.
You may win no competitions, but you should take pride in the tougher task of getting something done when there’s lots of pain and no glory. So let go of your secrets, fight shame with twelve-step and other aphorisms, and give priority to your spiritual growth, whether you do it by steps, religion, specialized ramp, etc.
Quick Diagnosis
Here’s what you wish for and can’t have:
• The strength and recovery your hard work entitles you to
• Delicious, boring normalcy and averageness
• Outstanding accomplishments and reliable performance to offer your friends, family, and employer
• Confidence in a future when you can count on being in good shape
Here’s what you can aim for and actually achieve:
• Know how far you can push yourself without causing relapse
• Know whom to call and what treatments to try in case of relapse
• Take pride in your performance, regardless of how it compares with others’
• Accept no nonacceptance
• Assemble a circle of approving, helpful people
Here’s how you can do it:
• Educate yourself about your disability and the risks and benefits of treatment
• Don’t let fear or shame stop you from doing what’s necessary to treat it and lead your life
• Educate people about your disability, your needs, and your standards for dealing with it
• Select friends and employers from the accepting
• Do not make it your responsibility to convert the nonaccepting
• Audit your performance regularly in terms of what’s possible, day by day
Your Script
Here’s what to say to a nonaccepting person who thinks you could do better.
Dear [Me/Relative/Boss/Disability Examiner],
I value your opinion about my [performance/efficiency/seemingly endless sick time], taking into account the [pain/unnerving tremor/fatigue/drooling] that