10 Reasons You Might Not Know I'm Disabled
After being diagnosed at age 20 with Gaucher disease, I have spent the last 19 years going from “professional” patient to clinical health psychologist. One of the most difficult parts of this journey has been learning to live with the “invisible” nature of my illness/disability. Here are 10 reasons why you might not know I have a disability.
1. I don’t look “sick.”
I’m not in a wheelchair and don’t use a cane or walker (anymore). In fact, I have a killer wardrobe, look cute and fashionable (so I’m told) and often wear heels. I used to “dress down” to my level of pain and energy but have found that “looking disabled” only makes me feel disabled. If I’m physically able to choose a cute outfit and do my hair and makeup, I will.
2. I’m a pretty happy and positive person.
This is partly my natural personality and partly a conscious choice that has developed after many years of dealing with my illness. Disabled people are often portrayed as sick and depressed. I have been both in the past; most of the time these days, I am neither.
3. I have a busy and active life.
This wasn’t always the case, but living with an illness/disability for many years teaches you how to manage your schedule and get things done. When I’m feeling well, I work, go to school, hang out with friends and family, and travel. The perception that disabled people can’t do anything but stay home and be sick is just plain outdated and wrong.
4. You only see me when I’m feeling well.
Self-care is essential to living with an illness/disability. I believe that learning to slow down and take the time to rest and recuperate when you’re not feeling well is important, so you can get back to your “normal” activities. If you see me out, it’s usually because I feel well enough to not be resting.
5. Caveat to #4: “Feeling well” has become a relative term.
There are often times when I’m in pain or exhausted and you are just not aware of it. This is because many people who live with illness/disability eventually (hopefully) learn to live and work with their limitations. On the flip side, this means when you do hear me admit to not feeling well, it’s probably pretty bad.
6. I’m aware of what’s going on in the rest of the world.
Disabled people are not hermits. In fact, I have had way more time to read, study and generally keep up with what’s happening in the world over the years due to the “enforced downtime” of illness/disability.
7. I don’t talk about all the ways my illness/disability affects my daily life, unless it’s relevant to the conversation.
For example, unless there is a reason, you generally won’t hear me talk about all of the time medical-related activities take up in my life, such as doctor’s appointments, dealing with billing/insurance issues and the side effects of this or that new medication. These things are just routine parts of my life that are probably as invisible to you as my illness/disability.
8. I prefer not to be thought of as disabled, and will go out of my way to feel and be seen as capable, competent and without limitations.
This creates a dilemma because I want the people in my life to understand what it’s like to live with a chronic illness, but don’t want to be defined by it in your mind. Therefore, I probably won’t really talk about it unless there is a problem, which can sometimes come off as inconsistency to other people. Walking this fine line is a constant task of living with invisible illness/disability.
9. I am extremely independent and don’t like to ask for help.
At my sickest, I was dependent on everyone around me for everything. Living with illness/disability has taught me how to be creative and how to prioritize actual problems that need to be dealt with, versus those that are not really important in the scheme of life. That being said, I most likely have not asked you for help when things were going wrong; you probably just heard about it after it already happened.
10. I feel fortunate in some ways.
I have been fortunate to have family and friends, as well as whole communities of other people in similar circumstances, with whom I can rely on for physical, emotional and financial support over the years. This is a big reason why I probably don’t talk to you about it often. If you know of someone who talks about their illness/disability all the time, maybe it’s because they have not been as fortunate. Please consider being a supportive friend in their life.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to firstname.lastname@example.org. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.