For starers, it took years for doctors to finally diagnose me with lupus. There are a host of symptoms, and it's hard to pin them down. Be that as it may, during the time that I was going into my doctors and telling them that something wasn't right, I started on a steady decline. By the time I finally found out what I had, I was much worse than when the problems first started. Rheumatological illness of any kind is just harder to diagnose because the symptoms can be from many other things. Also, not all rheumatological illness can be determined by a simple blood test. Some require more in-depth testing to determine whether you have them or not.
Another problem with invisible illness is the way that others view you. Sufferers might look to be as healthy as anyone else, but they aren't. When I park in a handicap spot, I often get dirty looks. Because I've gained weight with my illness, people assume I'm just lazy when I take the electric scooter at the store. They don't know that I have chronic pain in my joints, and that walking and standing, even for a short time, causes excruciating pain. Other rheumatological illnesses can cause the same symptoms, as can diabetic neuropathy. We may look just like everyone else, but we're not.
Often, I hear or read people ranting about how they see perfectly healthy people using the electric carts in stores, parking in handicap spots, getting line privileges at theme parks, etc. It is possible for healthy people to be lazy in a store, use someone else's handicap placard/license plate for good parking, or fake a problem at a theme park, but unless people are forced to go around with their medical papers everywhere they go, and surrender them to every person that questions them, assuming that someone is fine because they look fine is an incorrect assessment.
Know that to get a handicap placard/license plate, one must have their doctor fill out a form that explains to the DMV why the placard/license plate is needed.They must also carry with them a form that must be shown to the police should the police question whether they are the proper owner of the placard/license plate and why they must have it. Theme parks require some kind of proof that a person is disabled before they accommodate them. They need either a letter from a doctor, or some other kind of official proof. As for other accommodations that people with invisible illness may use, such as the electric carts in grocery stores, there really isn't a way to tell who has what unless you know the person.
Another problem with invisible illness is the way that other people treat them. People like myself have stories of doctors, family, friends, coworkers, acquaintances, etc. treating them like they're hypochondriacs or liars. It can be frustrating. For years, my two oldest had to defend me to other family members who labeled me to others as lazy. I stopped working because the symptoms I experience made it impossible for me to hold a regular job.
I worked hard for years. I even worked two or three jobs at a time. It was frustrating to give up having a paycheck. Frankly, I enjoyed having money to spend. I took my kids on mini vacations. I bought gifts for friends and family for birthdays and holidays that I would hunt for months to find, in order to find the most appropriate gift I could find. I would get facials, massages, manicures, pedicures, and we always had clothes that fit. We had a new car and never worried about the gas to get from point A to point B. Buying groceries and paying bills didn't phase me. For anyone who thinks I don't miss that, and believes that fighting to get social security for nearly six years now is somehow fun for me, you are sorely mistaken.
There were those who spread rumors that I was a hypochondriac or that I was just making something up in order to get attention. I lost some acquaintances that way, but that wasn't a big loss. I lost more due to the crimp my illness has made in my ability to go out and socialize like I used to. I love people, and I loved going out and visiting or making new friends. I can't do that anymore. Pain and fatigue have made it impossible for me to live as I once did. I don't get out much, and no one comes to visit. Doctors treated me as though I was a hypochondriac, as well. I had to keep switching doctors and demanding answers before I finally received a diagnosis. If I had been taking care of properly in the beginning, I probably wouldn't be as bad off as I am, because there are medications out there to slow the progress of things like lupus. Now that I've joined groups with others who have the same or similar illness, I've discovered that I'm not alone in the struggle for answers. Some of them struggled for decades before receiving help.
Even with a diagnosis, people can be very unkind or even treacherous. My mother, who just wants me to be healthy again, gets "health" and :"wellness" magazines that tout cures for lupus and other diseases, and she's always trying to get me to take some pill or try some special "cure-all" diet. I'm so angry with the unregulated health and wellness industry that if there was a lawyer willing to do it, I'd take them all on with their snake-oil cures. And the healers and psychics with their phony promises. I believe that there are healers out there. I also believe in psychic ability. I don't believe that people sending letters to my mother, asking for money every week are either. That's another industry I'd love to take on!
This post isn't just about me, though, it's about how people with invisible illness are mistreated by society as a whole. It's wrong to judge people by the way they look and make assumptions about them based on their race, gender, sexual orientation, etc., and most people in society have gotten that message. The problem is that those same people will look at someone and make assumptions about their health without thinking twice. Not only is it just as wrong, but those same people can be truly vicious to those that they make assumptions about.
People rant all the time about others that they know nothing about, assuming that the person they are attacking is healthy and not thinking that perhaps that person is suffering with an invisible illness. They have no right to demand proof or question that person. It isn't their place to do so, nor is right for those of us to who suffer to be constantly under scrutiny. Most of us don't enjoy our suffering (There may be some who do.), and we shouldn't have to wear some sort of badge or carry a card or wear a shirt that announces our diagnosis to everyone who might want to know why we're disabled. It's no more acceptable than asking people who wear jewelry to keep their receipts with them and show them on demand to anyone who asks, or make car owners show their license and registration to everyone to prove they own their vehicles. Society needs to start treating those with invisible illness with the same kind of respect that they would give to someone with a wheelchair or a cane or some other visible ailment.
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