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5 Things You Should Know About People Who Receive Disability Benefits

I have read so many stories about the misconceptions people have about those who are receiving aid from the government because of their health condition. Talking to people in the arthritis community and seeing that they have experienced similar struggles made me feel less alone. So if you are a family member, friend or loved one of someone who is sick, take a minute to read these five things you should know. If you are on the receiving end of benefits, you may find this resonates and provides you with some comfort, inspiration and motivation to keep going.

1. It’s not easy. We fight a difficult system.

You vs. the government. Who do you think will win the majority of the time, at least at first? Those of us who are chronically ill not only fight a battle many don’t understand, but we often must fight to receive emotional and most of all financial support such as disability benefits.

We need to deal with many loopholes within the system. Have you ever been on a roller coaster ride you hated and couldn’t wait to get off? Have you ever been to a circus and seen performers tossing each other around mid-air? That’s how the process of receiving disability and other benefits can be. It’s a long winding road, often leading us down the rabbit hole of the unknown.

The first time my parents applied for assistance to help them pay the bills from my condition (I was a minor at the time and couldn’t apply) they were denied. I wasn’t “sick or disabled” enough in the government’s eyes. Over four years later I would get approved for benefits out of nowhere, the second time I had applied on my own one year prior. By that time, my family and I were so exhausted from waiting. I wasn’t as shocked and ecstatic as I thought I was going to be, but I did give thanks. I felt relief and less stress, as did my loved ones.

Relief from stress didn’t last long. I was told I would be placed on medical review every three years to see if I am still eligible to continue getting benefits. I’ve probably visited my local Social Security 50 or more times over the past several years. I waited there four hours once, just to make sure a piece of paper was submitted and received. I was told to go see a disability doctor for a full body physical to prove my disability, which is probably the most uncomfortable thing I have ever done. Then that doctor would make a “decision” — as if she knew my everyday life to begin with.

I was cut from my benefits for two years because I supposedly went over the amount to be earned while working at my job at the time. A lawyer helped look at my case and saw that the SSA was actually wrong. I waited almost a year for a hearing with a judge who shook her head and said, “This girl should be receiving benefits.” Even after this, I was still cut from half of my benefits for five months, causing a stop to my Medicare insurance during that time, which then stalled and decreased the treatments I needed. All because the SSA office “overpaid” me.

In a way I feel it’s a trap and a curse to receive government aid. The amount of stress the government gives people who are chronically ill and their families who help support them is wrong.

2. No one wishes for a disability.

I am going to fill you in on a secret: No one asks to be disabled or sick. It’s not something people wish for, and they often struggle to accept it. I have talked to people who tried delaying being placed on disability because of the stigma society has created. It can be emotionally traumatic because it’s acknowledging the fact that the life you once knew — independent, working full-time and the freedom that comes with it is being taken away from you in a way.

You’re a part of and in the system now. There is nothing wrong with receiving assistance, so if anyone makes negative comments, remember they are not in your shoes. Many of us will grin and bear it until we can no longer.

The insurance you get with the benefits doesn’t even kick in until you have been receiving them for a certain amount of time. In general, Medicare and Medicaid is a whole other ball game. Coverage isn’t bad for prescription medications, general doctors and some specialists. However, many things are not covered at all.

3. We are not lazy.

Actually those who receive disability benefits are the exact opposite. Some of the hardest working people have been on or receive disability benefits. Many people can still work part-time due to the programs created by the Social Security Administration. Working full-time can be tricky because if you make over the set limit, benefits will stop and more issues will ensue.

4. The amount received doesn’t make you wealthy, and is not even enough to survive.

People who may appear wealthy still need and can sometimes receive certain disability benefits, especially if they have a child with significant medical expenses. Middle-class families also struggle. Just because someone has a house, a business and cars in the driveway doesn’t mean they aren’t financially struggling.

Someone who receives $500 to $1,000-something a month is not well-off, especially if they do not work. Family members can only help so much as they also have their own bills. An appointment with a specialist can be $200 to $500 just for one visit. Food can cost $200 to $400 a month at one store alone. These disability-related expenses leave no money left to even live on your own without working part-time or full-time.

5. We deserve to have fun and live life.

A life of paying medical bills, being in medical debt and struggling with a health condition 24/7, 365 days a year is not fun. It takes a toll on someone physically, emotionally, mentally, spiritually and obviously financially.

If someone who receives benefits goes on vacation or buys a pair of shoes, don’t automatically assume they have the money for it. Maybe they just want to live their life, take a break and treat themselves to something. Self-care is a must after all. Maybe a family member or friend treated them. If you are reading this and are receiving benefits, here’s my advice: Don’t justify or explain to people who don’t understand your situation and don’t care to. Sometimes it’s best to stay silent and only confide in those you know have your back 110 percent.

It’s easy for people to make assumptions from the outside. I dare people who are quick to judge to swap lives for one day to see what it is like for those of us who are receiving disability and other benefits, who are sick and unable to work full-time, or at all. I bet you would be thankful for what you have, and would want your own life back in a minute.

This story originally appeared on Rising Above RA.