As a chronically ill patient, Shannon has a lot of experience with illness overall. This gives her a unique perspective on writing articles.
The title probably seems to suggest that this is an article about sympathy. It isn’t. Those who live below the average middle class income face an entirely different set of struggles than what most people do. When you are disabled (or when your health overall isn’t good), it’s not an exaggeration to say that it’s terrifying. Here are some of the things that you deal with when you don’t have the financial resources that some others have.
How am I going to pay for a doctor?
Insurance, of course. That’s the answer that most people would give. But when you are disabled to the point of being unable to work, you are unable to pay premiums. The next answer is Medicaid (for US residents), but generally, to get Medicaid as an adult you need to have children, or you need to be disabled.
You cannot prove that you are disabled without a doctor.
Do you see how getting a doctor's appointment can be a little problematic? Many clinics and doctor’s offices offer sliding scales, but in some cases, an office visit can cost as much as $52 dollars on that. I know this because that was my cost. Fortunately, there are some healthcare networks that provide charity programs that can make a doctor’s visit free or very inexpensive. I pay $10 a visit (and I still don’t go as often as I should because of that $10).
What medicines can I do without?
This one is a big one. Not all communities have programs to help people dealing with disability get the medicines they need for their specific chronic illness or condition. And, those programs that do exist may not cover certain medications, such as opioids. This leaves the patient asking which medication could they do without that’ll have the least negative impact on their health.
What about generics and alternatives?
You can be sure that chronically ill patients try them, but in some cases, the generic isn’t an option. Though a generic is a comparable alternative to a brand name drug, there are differences aside from just cost. Many generic drugs have different inactive ingredients, some of which can cause adverse effects for those who are sensitive or have medication allergies. This often leaves patients sacrificing not only food and other necessities, but also some medications.
How will I afford food?
There are government assistance programs for help with food, but not everyone qualifies and if they do, it may not be enough. Those with chronic illnesses often times have food sensitivities that only allow them to eat certain things. For example, I cannot have pork. This cuts out all ham, bacon, canned vegetables seasoned with pork, and some cold cut meats. I also cannot have a certain artificial sugar: aspartame. I have to read every label of every food and drink that is reduced sugar or sugar free, and I have to know which ingredients contain aspartame even if it isn’t labeled as such to avoid some nasty health issues. When I shop, I either have to buy vegetarian/vegan foods, or most often, I’ll look for foods that conform to kashrut: foods that are kosher.
You shouldn’t buy anything expensive!
Unfortunately, sometimes expensive is the only option when you have to have a special diet to keep symptoms of an illness at bay or, in my case, prevent debilitating migraines. Just two of my examples can lead to costly purchases, or most frequently, I just do without foods I like.
How do I get places?
For most people, you just jump in the car and go. After all, that independence is great and the freedom to go anywhere, anytime is something most Americans enjoy. For those who are chronically ill, depending on the illness, driving at all isn’t an option. Or, if it is, it has to be planned around a medication schedule so that you aren’t compromised behind the wheel. Maybe driving to a doctor’s appointment depends on how well your hands can grip the wheel that day.
But there’s public transportation in most urban areas, why not use that?
Public transportation is wonderful, but unfortunately it isn’t ideal for everyone. If you have joint problems, for example, getting to a bus or train stop can be very challenging. Not everyone is accommodating of a wheel chair or someone on a cane or crutches when it comes to crowds. Fewer people are sympathetic to someone who suffers from a mental illness. Extreme social anxiety can make the world as a whole a very frightening place, but worst yet for some people is public transportation. And, affording a taxi or similar service just isn’t an option if you are already choosing which medications to stretch and which ones to do without.
How do I pay rent next month?
A very typical response to this is often something along the lines of “it’ll all work out, don’t worry about it.” The witty disabled individual in your life might ask when that line has actually ever worked at helping a situation. That’s a valid response too. Well wishes and statements like that, though appreciated, aren’t helpful in keeping an eviction notice out of the mail. When you have no income coming in, or your income is in the form of gifts from relatives and friends, making sure that you will continue to have a place to live is horribly stressful.
Why not move in with someone?
Do they have the room? Can they afford taking on another person? Will they be supportive and help create an environment that is actually less stressful and toxic than worrying about making rent? Is there actually anyone around willing to take on that responsibility? Will this new home have the same or comparable healthcare options? Is it a climate that will worsen existing symptoms? These are the questions I came up in just one minute.
Each person’s situation is unique, so just moving in with a family friend or relative may not be an option. It’s important to understand that when it comes to the financial struggles of someone dealing with disability.
When will I be able to replace my clothes?
For the majority of Americans, clothes are a big deal. It isn’t necessarily a matter of name brand, but finding something that fits comfortably, properly and will be durable enough to last. Getting the latest Ralph Lauren top isn’t a priority for most of those who struggle with disability. Getting one that’ll keep them warm during the winter is. So is replacing clothing that has outlived its usefulness.
There are clothing closets and thrift stores.
First, there are some things no one wants to buy second hand, even a poor disabled person. Undergarments should be purchased new, and the higher quality (read: more expensive) the longer it’ll last and ultimately save money. That aside, not every donation to a clothing closet or thrift store fits everyone, and there are a lot of people in need. Not everyone will get a warm coat in the winter because a charitable closet simply didn’t receive enough. And, not everyone will have summer clothes to help keep cool and stave off a heat stroke. In order to be decent in public and at least a little modest, wearing something inappropriate for the season might be necessary.
It’s so easy to look at someone’s situation and ask why they haven’t made it better, to encourage a loved one to “suck it up” and get a job to pay for what they need. For some people, this simply isn’t an option. As stated in the beginning, this article isn’t for sympathy, but rather for understanding.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.