Three Unnerving Questions Most ASers Ask Themselves
1. Do I look like a faker?
The notion that people could fake a disability is widely held in our culture. Maybe it's a form of denial around life changing illness and disability? Maybe it's because we see others as always looking for something for nothing? This concern is heightened when the condition is less visible, like arthritis, diabetes, or hearing loss. Trouble can arise when observers feel “sure” they know how to recognize a “legitimate” case, like when an ambulatory wheelchair user gets up to grab something off the top shelf at the grocery store.
Pictures can hurt
This sort of content is widely shared on social media and my friends often report being interrogated by random people on the street about any devices or accommodations or adaptives they're using. I'm eager to learn what's making these randos feel they've got a sophisticated understanding of health and physical ability and the authority to enforce it on others. Are they going to night school or taking correspondence courses? Are there webinars that I've missed?
Faker anxiety is one of the hardest aspects of living with an invisible or misunderstood illness. It weighed heavily on me before diagnosis and for most of the first ten years of my illness. I didn't want to look lazy or like I was minimizing what people with visible disabilities are experiencing.
Approval and acceptance are powerful
Deep down, we all know that we wield social power in who and what we accept, or give the benefit of the doubt to. And we all want to be accepted. Some people don’t understand what we're going through and might not know how to be supportive. Some people might think you're faking, but this is not a reflection on you. This is about them. It feels personal because it’s happening in your life, and it hurts. Perceptions of health and ability go to our most deeply held beliefs about the world. It's not your job to change that about anybody while you're reaching for some cornflakes. I’ve found that it helps to focus on my own health and happiness and work toward divesting from the approval of others. It’s not easy, but it’s good for your soul.
2. Will going public with my AS keep me single?
AS will be a part of any relationships you're in because AS is part of you. Keeping it a secret won't make it go away. Attitudes about health and ability have a social impact. Some people won't understand AS or you, but there are lots of people who will. It's important to be honest without being fatalistic and open to getting to know the right people.
3. What should I do when people tell me to be more positive about my AS?
If the person saying this is worth talking to consider asking what they mean. It may be that they're just worried about your mood, how much pain you're in, or some other change in you. These are things to speak explore with your doctor, therapist, or social worker. If this person is uncomfortable with your AS or unwilling to support you, think carefully about this relationship.
I find it useful to cultivate helpful and realistic thoughts. For example, if I can't do one thing there's probably something else. It's also helpful to remind myself of the benefits of being honest with myself about my needs.
Other than back pain and fatigue, what is the most common symptom that AS patients experience?