Poverty and chronic illness are a constantly rotating cycle, that shackles the hands and feet of those who are affected by it. The stress of worrying about how you’re going to pay for basic needs, combined with the costs of frequent doctor’s visits and complementary medicines just exacerbates the physical symptoms of chronic illness. The extreme stress from poverty, especially when facing hunger, homelessness and mounting debts often leads to destructive habits and desperate measures to cope with the stress, exacerbating symptoms and the need for healthcare, then lather, rinse, and repeat the cycle all over again. These aren’t just random conjectures, based on theory, they are known facts, based on my real-life experiences. 

The complicated, willfully confusing system of applying for benefits when you’re already bogged down with chronic illness, autoimmune disease, pain and trauma-related mental health issues, is a heavy weight to bear. The depression sinks in from the constant feeling of powerlessness over your own body and life, and it’s incredibly hard to shake off. It often feels like the system is designed to keep you sick, scared, and so busy staying in survival mode, that you’re too tired to change it, because you’re already at your limit.

Add to that the recent cutbacks in food assistance benefits for over 700,000 so-called “able-bodied” Americans, like me, which will take effect in April of 2020, and the odds are stacked even higher against those of us who are living in poverty, with chronic illnesses. How do you pay for a phone bill, heat, rent, transportation, basic toiletries, maintenance supplements for your illnesses, AND food when you’re perpetually unemployed or underemployed, because your health issues cause you to frequently miss work? Unemployment insurance only lasts a few months, and state-based disability is nigh on impossible to get. And how is a trauma survivor, living with autoimmune thyroid disease, fibromyalgia, chronic migraines, depression, daily lower back pain, neuropathy, complex ptsd and anxiety still considered to be “able-bodied,” according to the powers that be? I’m still trying to figure out the answer to that question as I remain in limbo, trying to appeal the denial of my application for disability, or re-apply with legal help, which I can ill afford. 

Here again, I strongly believe that the system is designed to be difficult to navigate, so that folks just give up on the application process altogether, letting those of us with debilitating ‘invisible illnesses’ fall through the cracks. 70% of disability claims are denied on the first try, necessitating the help of seasoned lawyers, who know how the system works better than I ever will. Most successful disability claims are only won after several or more tries, and years of being tied up in the merciless claims and courts systems.

Along with the other physical and mental health issues that I’m dealing with, as mentioned above, there are other issues, from the medications and the illnesses themselves, which cause additional barriers to keeping gainful employment. I have been dealing with daily insomnia, caused by a number of factors. I’m afraid to go to sleep at night, and when I do eventually fall asleep, I’m usually waking up several times, from pain, nightmares or because I stop breathing, from sleep apnea. I’m legitimately scared that I’ll suffocate or have violent nightmares, as my brain processes old traumas and new fears and stressors in my sleep. Fibromyalgia, thyroid disease and depression also cause insomnia, which just compounds the problem. Lack of restful sleep impedes cognitive function and motor skills, which are pretty essential to performing any job, even the less skills-based ones.

I’m a bit agoraphobic too now, because I know that at any given time my legs could suddenly give out, my feet could go numb, my lower back could seize up, or I might need to suddenly find respite if fatigue sets in unexpectedly. These have all happened to me while I’ve been out, causing embarrassment and anxiety. I don’t have the money for a car, a cane, or any other mobility aids, and I’ve been waiting for months to sign up for physical therapy, which should help increase my mobility, in theory. There’s no guarantee that my health plan would cover the weekly therapy sessions that I actually need, and it certainly doesn’t cover mobility-aiding devices either, since my condition is still not considered “disabling enough,” according to many insurance companies and medical experts.

I’d like to see the people who decide what is a disability and what is not spend a day in my body, and then see if they change their definition of what constitutes as a disabling disorder. The experts can’t even figure out what causes fibromyalgia yet, and they don’t usually have to live with it themselves, so they have no clue how much it changes your body, and your energy and mobility levels. But guess what? I do. 

That’s why I’m so freaked out, because it happened so fast, and it took me from being reasonably active and productive to becoming a weepy, shaky, sleepy mess in almost no time, though I can see the early signs were there now.

And what’s the one common denominator in this whole story, the one thing that could change almost everything for me, and so many others? Money. If I had the means, I’d skip the lines and the endless paperwork, the 45+minute hold times at the benefits offices, and the bureaucratic nightmare of fighting for disability. I’d hire a patient advocate, home healthcare worker, physical therapist, trauma-informed psychotherapist, life coach and a job placement service. I’d hire these services to help get my body and mind into a better place, and to help me find a job that I can actually do, with flexible hours and benefits. I’d end what are already several full-time, unpaid jobs looking for ways to survive and I’d focus instead on improving my overall health. Do you have any idea how exhausting it is to do all of these things and try to take care of basic needs? Did I mention that the chronic insomnia, frequent migraines and depression also zap any energy that wasn’t already in short supply to begin with, from the fibromyalgia and autoimmune disease?

Believe me when I tell you what kind of fortitude and perseverance it takes to get through the day with chronic illness, trying to look for ways to lift myself out of poverty somehow, so that I won’t get any sicker, because it’s a known fact that stress and trauma can exacerbate neurological conditions like fibromyalgia, and trigger migraines too. And who doesn’t already know that constantly dealing with deeply flawed healthcare and social programs systems is really stressful? And who isn’t aware that anxiety, hyper-vigilance, and agoraphobia are all very taxing to an already delicate body and compromised immune system? And what exacerbates all of those conditions, even after the initial traumas have stopped? Stress, that’s what. 

Unfortunately, my body doesn’t know that the abuse and the trauma have stopped, so it treats every possible threat as a reason to automatically go into fight or flight mode, which is energizing for a hot second, but then it always leads to a crash afterwards, and it isn’t pretty. It can leave me out of commission for days, or even weeks, depending on how big the trigger was. I’ve tried mindfulness, deep breathing, you name it, to try to offset it, but it only helps me feel better emotionally, not physically.

Almost everything I’ve described here comes down to money, and the degree of ease to which it is obtainable. Many people with chronic illnesses are more likely to earn less than their fully functioning counterparts, and that’s if they are able to keep means of stable employment maintained, which is considerably less likely. People with chronic illnesses are frequently sick, and that means more sick time is required, when it’s available, or pushing oneself past the limits of physical capacity, often necessitating hospital visits or extended absences from work, due to symptom flare-ups, or the worsening of illnesses. And because they’re often taking more time away from their jobs due to illnesses or doctor’s appointments, they are frequently viewed as being less reliable than their healthier colleagues, which means that they’re more often overlooked for promotions, and their employment itself is often placed in jeopardy as a result. 

I’d like to say that improvements in employment laws in regards to people with disabilities, including many chronic illnesses, has protected workers from discrimination and termination across the board, but I’d be lying. I have seen firsthand the effects that chronic illness has had on employment stability, both from my own experience, and from witnessing others go through similar struggles. 

It is deeply unfair to face such discrimination, especially given how much time, effort and emotional labor it takes just to function and cope at all in the workplace with one or more chronic illnesses. But then again, it often comes down to business decisions with employers, and that means making decisions based on making money first.

So hopefully now you can see how the cycle of poverty begins, ends, and then begins again for many people with chronic illnesses. I’m writing about these issues from personal experience not only because I tend to stick to subjects that I know, but because I’ve found from previous history that the most successful cases I’ve seen for structural changes in how marginalized people are treated come from firsthand stories. 

In spite of the rather bleak picture that I’ve painted on what it’s like living in poverty with chronic health conditions, I retain some hope that things will change for the better for those of us with chronic, often invisible illnesses and disabilities, if we continue to shed light on what the living conditions are really like. 

I continue to work towards and look forward to a day when laws and social programs are redesigned with empathy first, and a moral imperative to act on behalf of those in need first, taking each person’s unique experience and challenges into consideration.Taking the time to listen to and share our stories might just force those with the legislative power to make things better for us. Those of us who’ve already got too much to deal with on our plates, but don’t have enough food on it, need that food, water, shelter, and the room to breathe a little easier, knowing that there is at least a safety net in place to catch us if we can no longer function in environments designed for healthy, able-bodied people.