Disability and handicapped are two words that have come to haunt many invisible illness sufferers. In case you are reading about chronic illness for the first time and you are wondering what in the heck an “invisible illness” is, I have some great education in store for you on this post!
Society has the perception that in order to be sick, there must be some outwardly signs or assisting equipment with walking or mobility in order for an illness or disability to be valid. The perception is that if someone is not walking with a cane, doesn’t have a limp, isn’t using a wheelchair, or doesn’t have the appearance that they are on death’s door that a person cannot be handicapped or disabled.
But the reality is that with chronic pain and many chronic illnesses, to the outside world, we look normal, healthy and “appear” to be functioning at what society assumes is a healthy level. The cold hard reality is that there are millions of chronic pain and chronically ill people in the United States who have impairments to a significant degree that causes them to not function to a normal capacity on a daily basis.
Here is just a short list of illnesses that are considered invisible illnesses:
- Chronic Fatigue Syndrome
- Chronic pain of varying types
- Multiple Sclerosis
- Lyme Disease
- Interstitial Cystitis
- heart disease
- cystic fibrosis
- and many more…
While having maybe just one of these conditions to a mild or even moderate degree may not qualify someone for Social Security Disability, the facts are that most of us have MORE THAN ONE of these illnesses (I have 4 of the above listed) and that is where disability becomes necessary.
Not only are the above conditions “invisible” to society, but so are all of the side effects and issues we face with medications we have to take because we have these illnesses. Because many of us have more than one invisible illness, we end up on several medications a month just so that we can get through the day sane.
Society has this perception that people on disability are taking advantage of the system, aren’t really sick, are lazy and don’t want to work. The perception is that when someone hears that a person is “disabled”, they assume that it means that a person can’t do anything at all -ever. This is not the case. With Social Security Disability, in order to win your benefits you have to have not worked for at least 6 months prior to applying and you have to show that you can’t hold substantial gainful employment for at least a year after.
At the time I was awarded my benefits, I was extremely ill and wasn’t able to work at all or do hardly anything and I was like that for a few years. I still can’t work enough to hold substantial gainful employment (which in 2011 is $1,000 month/gross), but I can do more now than I could in 2006. But I would still be considered “disabled” because I can’t work a full-time job or work enough hours to make what the government considers gainful employment. If I were to try at this point to go out and work a 40-hour a week job, I would end up back where I was in 2006 – bedridden and I would have to start my recovery all over again and each time the extremely bad flares hit it takes longer and longer to come back the older I get.
Society gets only a glimpse, a blink of an eye, into our world and they pass judgment strictly on those few minutes or hours that they have contact with us. They don’t see what happens after we get home, or all of the days we may spend in bed because of the one activity we tried to participate in. They don’t see all of the doctor’s visits, the days, weeks and months we have had to spend in bed trying to recover from a few hours of work or fun.
Society doesn’t see us up all night because of the pain and overwhelming fatigue that makes us so sick we can’t sleep. They don’t see all of the suffering we do behind closed doors. According to Brian Grady, Ph.D.:
People’s understanding of illness is based mostly on acute conditions. We understand a cold or a broken leg. People are either sick or healthy. The sick and healthy roles are well understood. Sick people complain, look ill, and remain inactive while they recover, which is usually within a few days or weeks. This is true for acute illnesses or pain. We also have an idea of what an invalid is. This is a person who needs to lie in bed being cared for long term. But what about the role of someone with a chronic condition that is not totally disabling? Someone who can go for walks, for example, and do some errands, but has limited capacity. This role is not so well defined in our culture.
Based on the well-sick-invalid framework, you are allowed to be sick or limited for a while. After some months, people will be expecting you to be back to ‘normal’ – that is, a healthy, fully productive state. If you are not, but you look ok on the outside, there may be misunderstandings, rejection. Some people judge you as lazy, exaggerating, or accuse you of faking to get insurance benefits or attention. Or they expect too much of you, overestimating your current ability. Dealing with people’s misunderstanding and judgment, suspicions, and assumptions is painful. Having to justify your lack of productivity is an extra stress on top of having the actual condition.
Based on the well-sick-invalid framework, people expect that if you look ok, you are ok and can function normally. And if you can function OK now, you must be OK 18 hours a day. Expectations are based on appearances.
This creates a problem. With a chronic condition, you can’t stay in bed and live a totally disabled lifestyle until you feel better. If you did this, you would not function at all. Many conditions require you to do your best while you feel your worst. You appear capable when people see you active, even if you are limited at other times.
The important thing that we have to remember is we have to take care of our health first, regardless of what others think of us or say about us. Someone is always going to have an opinion and ignorance will always be abundant. We each have to choose to live our lives to the fullest that we possibly can while keeping in mind our physical limitations.