Seeing Chronic Illness: Symptoms, Stigmas and Solutions
Approximately 133 million people in the United States suffer from a chronic illness according to a report by the National Health Council. By 2020, that number is estimated to hit 157 million.
The council’s report also noted that almost a third of the U.S. population is now living with multiple chronic conditions. Whether it’s diabetes, heart disease, or depression, it isn’t atypical for one chronic illness to be accompanied by another.
Unfortunately for many sufferers, chronic illnesses are commonly left undiagnosed and untreated, sometimes significantly impacting a person’s livelihood and quality of life.
This may be attributed to the often debt-inducing costs of treatment — with treatment for heart disease, cancer, mental disorders, and pulmonary conditions topping the list as most expensive.
The council reports that chronic illness costs impact the economy at a ringing number of $1.3 trillion a year.
In addition to expenses, those who have chronic illnesses are often up against the challenge of living with an “invisible” affliction. Asking for help can be made harder when medical professionals and peers don’t believe the sufferer’s pain. Even in cases where someone struggling with chronic illness does speak up, they are often met with the disheartening phrase, “you don’t look sick.”
While chronic illnesses are endured by a large number of Americans, the lack of dialogue about them continues to perpetuate social responses and financial circumstances that are ultimately detrimental to the sufferers. It’s time to get informed.
Sometimes, mental health conditions may follow recent health diagnoses. They may also, however, accompany chronic illness sufferers for a sustained period of time as they cope with their condition(s).
Managing mental obstacles can make struggling with a chronic illness even harder — with exacerbated feelings of stress, anxiety, and depression making once enjoyable activities unbearable. There may also be a a strong correlation between the incapacity of one coping with chronic illness to perform physical activities and decreased mental wellbeing.
One of the most common mental illnesses among chronic illness sufferers is depression.
Symptoms of depression can include: feeling empty, loss of pleasure, fatigue, trouble with concentration and memory, lack of sleep or too much sleep, thoughts of suicide, aches, headaches, and digestive problems. If symptoms last for more than a few weeks, it is best for those to seek a medical professional.
And while the diagnosis of mental illness, like depression, can be closely linked to the diagnosis of a physical illness, the reverse is also true. Scientists still have much to learn about the complex ways that mental and physical health influence one another, but it’s clear the two are greatly intertwined.
Yana* who struggles with bipolar disorder and Poly Cystic Ovarian Syndrome said, “Being queer and being sick is exhausting.”
Yana identifies as non-binary and says that at a young age they began to struggle with depression and anxiety. “Then my PCOS began to affect my adult life. I feel as if I’ll be sick forever,” they stated over email correspondence.
Depression generally affects 10–25 percent of women and 5–12 percent of men. One in three who identify as LGBTQ struggle with some type of mental illness compared to one in five heterosexual people.
According to the US Transgender Survey, 40 percent of transgender adults have attempted suicide in their life.
“A way for me to find support is my LGBTQ community in my city. I am surrounded by peers who uplift me and who remind me that I am worthy,” explains Yana on the topic of their chronic depression.
Lack of medical support is a huge concern for people like Yana who do not have the funds, nor the understanding, from healthcare providers that they deserve.
“Suffering without the proper means to address my issue is always a constant worry for me. I’m always terrified that I won’t be able to treat my PCOS properly or that I’ll be diagnosed with another serious illness. It’s a cycle I can’t seem to break,” Yana adds.
Pelvic Pain (Hernia Mesh + Transvaginal Mesh)
Persistent pelvic pain after hernia or vaginal mesh surgery is a serious complication that is affecting people all over the world. Though mesh removal is possible, it does not always promise the cure of intense pelvic pain.
Hernia meshes are implanted in the upper stomach, abdomen, or groin in order to support weak tissue. The mesh lowers the rate of hernias, however, it can also cause life-altering side effects. Bleeding, infections, debilitating pain, erectile dysfunction, and hernia recurrence are common side effects.
In 2014, the U.S. Food and Drug Administration updated their warning labels on poor performance and adverse effects. Though not everyone has severe complications, the removal of a hernia mesh is recommended if any complications occur.
In a documentary which covers the often life-altering consequences of medical devices, The Bleeding Truth , several women spoke on the suffering they endured because of side effects that followed their transvaginal mesh insertion.
The synthetic materials in the mesh and improper placement of the device are what are thought to be causing the complications which leave patients immobile and unable to live a normal life. For the women in the documentary and countless others, the mesh has caused issues related to their sex life, physical capabilities, and mental wellbeing. To add to these afflictions, women who suffer with chronic pelvic pain often also face sexism within the medical community — often considered “hysterical or emotional” when confiding in a medical professional about pain.
To bring light to these issues, MedTruth shared the stories of transvaginal mesh survivors for Pelvic Pain Awareness Month.
With more than 500,00 being implanted a year after childbirth, hysterectomies, or menopause, it’s imperative that medical professionals warn women of the side effects.
Truvada is a combination of antiviral drugs in order to treat HIV/AIDS, although it is not a cure. Combining two medicines in one pill to block the HIV enzyme and prevent “the disease from multiplying,” and “reduce the amount of HIV in the body,” this pill is to be taken once a day and accompanied by safe sex practices and regular testing.
Though revolutionary, and 99 percent effective, Truvada has been linked to bone loss with nearly 6,000 bone breaks. Common side effects include: headaches, stomach aches, weight loss, jaundice, dizziness, muscle pain, abdominal pain, loss of appetite, bone pain, serious liver and kidney problems.
The antiviral drug company, Gilead Medicine, has received numerous lawsuits as people demand a safe HIV drug that may be administered without invasive side effects. More studies and new formulas are underway to reduce kidney and bone risks associated with the drug.
Truvada is also expensive-costing $2,000 for a 30 day supply. In addition, Mutual of Omaha, an insurance company, has a blanket policy of refusing long-term care insurance to anyone who takes Truvada, regardless of sexual orientation.
According to Rewire News, opponents argue that because the policy disproportionately affects gay men, as 80 percent of Truvada users are gay men, the policy is a form of discrimination.
“This is an industry-wide policy and practice. Gay men can either get insurance or they can forgo taking the best biomedical HIV prevention method in the history of an epidemic that has claimed so many lives,” wrote Ben Klein and Alex Weinstein in an Advocate article.
What makes these chronic illnesses complicated is that they are seemingly invisible; They aren’t always apparent to the public at first glance. Physical ailments may vary from day-to-day.
Some other “invisible illnesses” include Lyme Disease, lupus, fibromyalgia, and Crohn’s disease. The denial of these illnesses in those who suffer in silence can make coping with the illness even more challenging.
To overcome stigmas associated with chronic illness, many turn to grassroots rallying for medical concerns that are ignored or written off as psychosomatic. Online forums have served as a huge resource for sufferers who find strength, support, understanding, and validation in having their stories heard by those who can, quite literally, feel their pain.
Together, the advocates of these communities bring greater visibility and a voice to invisible illnesses that are too often silenced.
As for those looking for help beyond peer-to-peer communities, it’s best to keep track of symptoms and when they occur so that doctors can have a clearer insight when approached with the issues.
*Yana has requested for her identity to remain anonymous.
S. Nicole Lane
S. Nicole Lane is a freelance journalist based in the Southside of Chicago where she covers women’s health, the LGBTQ voice, arts, and entertainment. Her byline can be found in Playboy, Rewire News, i-D, Broadly and various other corners of the internet. She is also a visual artist who works with small-scale sculptures.
Originally published at https://medtruth.com on June 5, 2019.