Navigating the Unseen Battle
My Journey with Two Invisible Illnesses
What’s more elusive: my invisible illnesses or society’s understanding?
While having autism can appear invisible, it is far from being invisible. Only when I mask does it become invisible to others. But I have two invisible illnesses that even my wife and immediate family have difficulty acknowledging; chronic migraines and drug-induced anemia.
The Social Security Administration denied my disability payments, so I had to retire early at 50 because of chronic migraines. The anemia problems are more recent, and simply compound the problems of chronic migraines. Both medical professionals are having a difficult time treating them so I can work again.
Defining Invisible Illness
We can define an invisible illness as “a physical, mental or neurological condition that is not usually visible from the outside. These conditions can limit or challenge a person’s movements, senses, or activities.”
While most private disability insurances (this isn’t workers’ compensation–I’m talking actual disability insurance) don’t cover things like chronic migraines or pre-existing conditions for individual policies, some might cover other conditions typically seen as invisible illnesses. Depending on the situation, some policies cover expenses for a certain amount of time. These kinds of insurance are not about full income replacement, the same is true with Social Security Disability Income (SSDI).
SSDI is not designed as a living wage for someone and typically covers only up to 50% of the state’s living expenses. This means someone getting SSDI would have to make up for the rest through other forms of charity, like living with family or any available state resources. As the Administration states: “While some programs give money to people with partial disability or short-term disability, we do not.” And you need to show your condition will cause unemployment for a year or more, or death.
Even though I was denied by the Social Security Administration, depending on the individual circumstances, there are possibilities of obtaining coverage for what I’m about to list. But this isn’t guaranteed, as one would expect.
A List of Few Conditions Typically Not Covered (a)
1. Fibromyalgia: A chronic pain condition that may be difficult to diagnose and assess for disability benefits.
2. Chronic fatigue syndrome (CFS): A condition characterized by severe, unexplained fatigue, which can be challenging to prove for disability claims.
3. Lupus: An autoimmune disease with a wide range of symptoms, including joint pain, fatigue, and organ involvement, but eligibility depends on the severity of symptoms.
4. Irritable bowel syndrome (IBS): A gastrointestinal disorder with symptoms that can vary in severity and may not always meet disability criteria.
5. Endometriosis: A painful gynecological condition that may affect an individual’s ability to work but may require substantial medical documentation for disability claims.
6. Depression and Anxiety: Mental health conditions, including depression and anxiety disorders, can be invisible illnesses, but eligibility depends on the severity and impact of daily functioning.
7. Post-Traumatic Stress Disorder (PTSD): Another mental health condition that may or may not qualify for disability benefits based on individual symptoms and severity.
8. Multiple Chemical Sensitivity (MCS): A condition where individuals experience symptoms when exposed to certain chemicals or environmental factors, but it’s challenging to prove disability.
9. Chronic Pain Syndromes: Conditions like Complex Regional Pain Syndrome (CRPS) or chronic back pain may be invisible but may require substantial medical evidence for disability claims.
(a) After conducting an internet search, I carefully assembled this list. Some of these conditions have internal casework on how to cover them on the Social Security Administration website, but that said getting coverage is difficult compared to other conditions. Typically, getting coverage for these conditions requires many factors and considerations that are unnecessary for other conditions, such as increased medical documentation.
There’s a caveat with this above list. They are subject to change by the legislative will of the U.S. Congress. The U.S. Congress can amend those sections dealing with what conditions are covered by Social Security Disability Income. But they can also reduce the number of conditions covered to shrink the budgetary costs. Thus, creating even more socially invisible illnesses.
Currently, “arthritis and other musculoskeletal system disabilities” are the most approved disabilities for Social Security in the U.S., followed by various severe mood disorders, severe nervous system and sense organ problems, and intellectual disabilities. That’s why children with intellectual disabilities receive social security disability income for their entire lives.
My Diagnosis Story
Back in September 2014, I was diagnosed by Johns Hopkins with vestibular migraines. I was experiencing migraines, which had severe vertigo elements. These kinds of migraines are not as invisible as a dizzy person can be obvious and who hasn’t experienced being dizzy in their life and had to lie down. So, you end up having a lot more sympathy for this kind of migraine.
The problem with my migraine is that it became chronic and more invisible as it lost the vertigo component. So, now I was having a simple pain in my head that no one could see but I could feel. Worse was the aftermath of the migraine always left me exhausted for hours. But during this time, I pushed myself to go to work, only to turn back when a migraine would strike. I even kept at work in the breakroom freezer, this “gel helmet” I used to cool my head down during an attack. I was trying everything to keep working, despite the work-at-home accommodation I got and general understanding. I wasn’t alone at my work with migraines, and they had built several years ago a special room for such people. Except I think I was by far the worst case they had seen. Working for a faith-based organization, my former employer displayed remarkable tolerance towards someone in my condition.
The Impact on My Self-Esteem
The problem is that I’ve had these conditions for the last seven years now and have been in retirement for six. I blew through my 403(b) within six months after leaving my job and had to pay taxes on it, only to cover the Continuation of Health Coverage (COBRA) payments while my wife secured a job with health insurance. As I noted above, at first, I hoped that I could work once the doctors fixed my problems. But as time marched on, the reality that things would not get better increased. Then I suffered a double frozen shoulder for one year, and a rupture in a slipped disc requiring neck surgery following this. The last thing that happened to me was full-blown anemia caused by the blood thinners I’m on for my two genetic clotting factors. Being sick, I couldn’t help around the house and lost hope. I suspect in some ways, the same has happened with my wife because, from her perspective, I appear depressed and grumpy all the time.
The problem is as an autistic; I suffer from suicidal ideation issues, and I sometimes wonder if walking a short distance from my house to get hit by a car in traffic would help my situation. On one end, I could end up dead, but I don’t know if the life insurance would rule this as a suicide — they might once they read this. In the middle, I could end up injured enough to qualify for some form of Social Security Disability. And in the end, nothing could happen to me, and they could sue me for insurance fraud. Honestly, the options don’t look too good with the fact that two of them would more than likely trigger an evaluation of my mental state. But on the positive side, I might get listed to prevent me from owning any guns in Maryland since I’m a risk to myself. Although, I suspect doing such an action could be the last straw for my wife of 26 years.
It’s no wonder why one study found that disabled “people with cognitive, complex activity (defined as functional limitations in self-care and/or independent living tasks) and multiple limitations had the highest risk of suicidal thoughts, suicide planning and suicide attempts.”
Misunderstanding, Stigma, Coping and Advocacy
Invisible illnesses are still real, even if we can sometimes hide them with medication or willpower. There will be times when everything falls apart and you might find yourself in bed all day unable to do anything. If this continues, it can lead to unemployment and mental health issues like depression or even suicidal thoughts. Then some become addicted to painkillers or alcohol.
These all become unhealthy coping strategies to deal with the crap of social misconceptions and stigmas.
If you are lucky, you have a decent support network of family and friends, or in my case, I also have psychological benefits I can pull on.
But the fact is, things like migraines are nothing more than common headaches even with disability insurance. Something easily taken care of by over-the-counter medications, so how is it disabling? This is a failure to understand the medical nuances of migraines, even possibly by some in the medical field. Other invisible illnesses, like certain mental illnesses, society doesn’t want to deal with, and it shoves them into the back corners of our cities and towns. Or worse, you end up with advocacy groups who try to put a smiley face on a condition that’s so broad and heterogeneous that it includes what most of society considers objectionable behavior.
Then we have groups, like the American Migraine Foundation, who are constantly trying to get the word out about the disabling impact of migraines. Despite the internet being crammed full of migraine resources, June in the U.S. is considered migraine and headache awareness month. While there is no designated national anemia month, September is dedicated to raising awareness of sickle cell disease.
Conclusion
Invisible illness can be more debilitating than physical disabilities. The reason this is so, is that society doesn’t see them as important to care for. We shove them into the back of the room or consider them simply as normal occurrences, like migraines. Or with drug-induced anemia, people have never heard of it, so again, people don’t care. Besides the natural social bias is that only women get anemia at least once a month, and men don’t. The same bias is true for male breast cancer.
Because of biases and stigmas, research funding and effective treatments for invisible illnesses are limited. There are only a few medications for chronic migraines, some are covered, and others are not. Some seem more beneficial, and I would like to take them daily but can’t because of the 15 migraines a day per month rule, which limits the amount.
Constant education, like national awareness months celebrated by advocacy groups, is necessary to fix this in society. Along with improving funding for more research and documentation of these conditions. And finally, countering any prejudices encountered.
