How Chronic Illness Can Kill Your Self-Esteem

Chronic Illness and Self-Esteem

I recently read a post on Reddit on the r/autoimmunity subreddit titled ‘Losing Everything‘. In the post, the author describes being diagnosed with Sjogren’s Syndrome, an autoimmune condition affecting one’s moisture-producing glands. The author has also been living with other autoimmune diseases, including Graves’ disease, Hashimoto’s Thyroiditis and Granulomatosis with Polyangiitis (GPA), for quite some time.

She goes on to say that since being diagnosed with these conditions, she feels like she is losing everything that makes her ‘herself’. For example, she is an artist, but she has lost the use of her dominant hand as a result of her conditions, leading her to quit her art. She also had a unique style, with beautiful thick hair and piercings. However, most of her hair has now fallen out and she had to remove her piercings due to constant infections.

The author’s post made me think of my own struggle with chronic illness and how having Sjogren’s Syndrome, Hidradenitis Suppurativa (HS) and Benign Fasciculation Syndrome (BFS) has impacted my sense of self.

Although I have both good days and bad days, I often resent my body and these diseases for what they have ‘taken away’ from my life. I often think to myself, what would I have accomplished by now had it not been for this disease? Would I be further along in my career? My education? Would I have more social connections and deeper friendships? It’s hard to quantify, but I feel like my life would have been very different had I not developed autoimmune issues. In other words, I don’t feel like I can be my true ambitious self because of my chronic illnesses.

I could also relate to the author’s mention of her outward appearance, like her hair and piercings. I notice that I often think ‘why bother?’ when it comes to things like fashion and beauty, which were important to me before my diagnosis. I think this is because I’ve adopted the mindset that I am ‘diseased’, so why bother to look nice? This is definitely a negative mindset that I’m continuing to work on, but, I think it’s important to acknowledge how chronic illness can impact your sense of self- whether it’s your own self-image, or even your outward appearance.

I also recently read a powerful testimony on The Mighty by Megan Klenke titled, ‘How Chronic Illness Can Drastically Affect Your Self-Esteem’. In her post, she describes the shame that many individuals with chronic conditions and disabilities face, such as having to ask for help to do tasks that they once did independently, using a wheelchair, or dealing with embarrassing side effects of medications. Furthermore, Megan also points out that simple things like missing family functions or get-togethers with friends as a result of illness can make one feel left out and like an ‘awful’ family member or friend.

A YouTuber I follow named Samantha Wayne also created a video detailing her struggle with the impact of lupus on her self-image. She ended up being hospitalized and had to take time off to rest. During this time, she says she felt useless and like she wasn’t doing enough. Also, she had to step back from her job because being on her feet all day was taking a toll on her health. The medications she was taking, such as prednisone, also impacted her outward appearance.

Samantha did say that leaning on her support system has helped her to get through negative feelings about her self-worth. She also says that realizing that everyone is worthy, regardless of their health status, has also helped. Furthermore, she says that while her disease caused her to lose certain hobbies, like competitive basketball, she was able to adopt new hobbies and learn new skills such as video blogging on her YouTube channel, which she started in order to raise awareness about lupus. Finally, she says that practicing gratitude for the things she can do and what she has is another way that has helped to overcome her low self-esteem.

Has having a chronic illness impacted your self-confidence, and if so, how have you handled it? Let us know in the comments below!

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Top News in Autoimmune Disease – October 20, 2019

Evidence of autoimmune response in patients with autism

Autism impacts 1 in 59 American children by age eight and can seriously impair social skills and communication, and lead to repetitive behaviors and restricted interests. For the first time, a team of Boston, Massachusetts-based physicians and scientists have published a report detailing evidence of an autoimmune response against brain cells in patients with autism.

Matthew Anderson, MD, PhD, was the lead researcher in the study. His team analyzed brain tissues donated through Autism BrainNet, a non-profit tissue bank, and noticed that over two-thirds of the brains examined contained three uncommon characteristics.

Firstly, they noted the accumulation of immune cells surrounding blood vessels in the brain (called perivascular lymphocyte cuffs). Secondly, they found that there were bubbles or blisters (that scientists call blebs) accumulating around these blood vessels. Finally, upon further examination, they found that these blebs contained debris called astrocytes.

These findings are evidence of an autoimmune response and chronic inflammation in the brains of patients with autism. The scientists also compared the autistic brains to those of non-autistic donated tissues, and the presence of these findings in the autistic patients ‘significantly surpassed’ that of the control cases.

Although this study does not definitively prove that autism is an autoimmune disease, it is a first step in finding evidence of an immune response for this neurological condition. Anderson compared his team’s findings to research that multiple sclerosis (MS) is an autoimmune disease caused by the immune system’s destruction of the nerves’ myelin sheath.

To read more about this astonishing study, click here.

Family of woman with scleroderma seeks financial support

Yesenia Garica, 25, of Newhall, Santa Clarita, California, first began experiencing debilitating symptoms five years ago. However, it took years for her to get a diagnosis of scleroderma – an autoimmune condition that primarily affects the skin.

Symptoms of scleroderma include hardened and thickened skin, ulcers and sores on the skin, joint pain, muscle weakness, intolerance to cold, high blood pressure, blood vessel damage, and scarring of the lungs.

Yesenia has been hospitalized six times and had surgery three times this year alone. As a result, she now weighs a mere 74 lbs. Unfortunately, her health insurance does not cover the medication that she is taking to treat her symptoms. As such, her family has set up a GoFundMe campaign so that Yesenia can continue to take the medication and to cover specialized treatment at UCLA. So far, the campaign has raised $4,700 out of the $10,000 goal.

To learn more about Yesenia’s condition and to contribute to her GoFundMe campaign, click here.

Top News in Autoimmune Disease – October 8, 2019

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions

Pop singer Sia recently revealed in a Tweet that she is battling chronic pain as a result of an autoimmune disease and another genetic condition.

In the Tweet, Sia said, “Hey, I’m suffering with chronic pain, a neurological disease, [and] ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote. “Life is fucking hard. Pain is demoralizing, and you’re not alone.”

Sia suffers from an autoimmune condition called Grave’s disease, which occurs when the body’s immune system attacks the thryoid gland. This results in hyperthyroidism, which is the overproduction of the thyroid hormone. Without treatment, the disease can result in heart problems like irregular heartbeat, blot clots, stroke, and heart failure, as well as eye health issues, like double vision, light sensitivity, eye pain and vision loss. It can even lead to thinning bones and osteoporosis.

In addition to Grave’s, Sia has Ehlers-Danlos Syndrome, a genetic condition and connective tissue disorder that can affect one’s bones, joints, skin and blood vessels.

Sia’s Tweet has garnered over 170,000 ‘likes’ on Twitter and has many fans responding with well-wishes and sharing their own experiences with chronic illness. One fan tweeted, “We love you so much Sia, you’re not alone either, please take care ❤ sending you lots of love and healing vibes.”

Her Tweet also draws similarities to Jameela Jamil’s Instagram message, in which she also revealed that she has Ehlers-Danlos Syndrome and another autoimmune disease called Hashimoto’s Thyroiditis, which causes hypothyroidism (the opposite of Grave’s Disease).

To learn more about Grave’s Disease, visit the American Thyroid Association.

Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

The President of the Philippines, 74-year-old Rodrigo Duterte, says he suffers from an incurable autoimmune disease. The condition, called myasthenia gravis (MG), is a neurological disease that causes weakness in the skeletal muscles, according to the National Institute of Neurological Disorders and Stroke. The disease can also affect eyelid movements, facial expressions, talking, chewing and swallowing.

Myasthenia gravis occurs when the body’s own immune system attacks the neurotransmitter receptors on one’s muscles. This prevents the neurotransmitters responsible for muscle contraction from binding to nerve endings, thereby preventing muscle contraction. This results in the widespread muscle weakness that is the hallmark of this disease.

Duterte believes that he inherited the condition from his grandfather, who had myasthenia gravis as well. “One of my eyes is smaller. It roams on its own,” he said, according to a transcript released Sunday by his presidential office.

Although Duterte appears to be in relatively good health, and myasthenia gravis can be managed with treatment, about 20% of the people with the disease will experience a health crisis at some point in their lives.

To learn more about myasthenia gravis, visit the MG Foundation of America website.

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Seeking treatment for chronic illness: when desperation takes over

Allyson Byers was desperate to find a treatment that worked for her painful chronic skin condition.

I recently read an article by Self magazine about a young woman named Allyson Byers who suffers from a chronic skin condition called Hidradenitis Suppurativa (HS). According to the Hidradenitis Suppurativa Foundation, HS causes painful abscesses and boils to form in the folds of the skin, often around hair follicles, such as the underarms and groin. While the exact cause of HS in unknown, it is believed to be autoimmune in nature.

Although the condition isn’t actually rare, with about 1-4% of the general population affected, HS is often misdiagnosed as other conditions, like cystic acne. Patients also frequently don’t tell their physicians about their symptoms due to embarrassment, until they’ve reached stage 3 of the disease (at which point, surgery may be required).

Allyson was fortunate to have been diagnosed six months after the onset of the disease, as a result of a knowledgeable family physician who recognized the tell-tale symptoms. She then went on to see a dermatologist, who prescribed a variety of treatments, from antibiotics, to diabetes medication, hormone-suppressing drugs and even immunosuppressants. But nothing seemed to quell the prognosis of the disease, and eventually, Allyson found herself in so much pain, she couldn’t even raise her arms or even walk, due to the abscesses in her underarms and groin. It even affected her sleep.

Needless to say, she was desperate for a cure- or at least a treatment. Allyson said that in her desperation, she turned to alternative medicine to help. She tried everything from special diets, like the autoimmune protocol (AIP), to supplements and topical solutions (like turmeric, tea tree oil and special soaps). She even saw a chiropractor for a controversial diagnostic test called applied kinesiology, which involves exposing oneself to potential allergens and measuring changes in muscle strength. She spent thousands of dollars on unproven ‘treatments’ in her quest to reduce her painful symptoms.

I know all too well what it’s like to be Allyson—I have HS myself. Unlike her, however, it took six years for me to get a diagnosis (the doctors I had seen in Canada hadn’t even heard of the disease). Before I got diagnosed, I was so desperate for a cure that I purchased different creams, salves and ointments online, that had no medical proof, but that claimed to ‘cure’ my symptoms. One of the salves I bought caused a horrible burning sensation on my skin; another, an oil made out of emu fat (I’m not joking!), did absolutely nothing other than make my skin oily. Some of these so-called ‘treatments’ may have even made my condition worse.

Several members of my family, who are big proponents of alternative medicine, even brought me to a naturopath in the hopes of combating my Sjögren’s Syndrome symptons. I followed various different diets to no avail, took all types of unproven supplements, and even tried chelation therapy, which involves the intravenous administration of drugs to remove heavy metals from the body (this can even result in death). Although I am not against exploring alternative treatments and making lifestyle changes, none of these treatments improved my condition, and they cost even more than science-backed methods.

Like Allyson, I am tired of always trying to ‘chase’ a new treatment, scientific or not, in the hopes of finding a cure. Although I will never truly give up, I would urge others suffering from chronic illnesses not to get desperate; or at least to not allow your desperation to cloud your judgement. If you’re going to try an alternative therapy, at least run it by your physician first, so that you can ensure it’s safe before testing its effectiveness.

Have you had any success treating your condition with alternative medicine? Comment below!

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10 Facts About Sjögren’s Syndrome

According to the Sjögren’s Syndrome Foundation (SSF), Sjögren’s is a systemic autoimmune disease that impacts the entire body, including the eyes, mouth, joints, nerves and major organs. In honor of World Sjögren’s Day, read on to learn 10 facts about this chronic autoimmune condition.

1. It is more common than you think

The SSF estimates that there are as many as 4 million Americans living with the disease, and it’s the second most common autoimmune condition. The exact prevalence of the condition is difficult to determine, however, since the symptoms tend to mimic those of other conditions, such as lupus, rheumatoid arthritis, multiple sclerosis, fibromyalgia and chronic fatigue syndrome. It can even be confused with menopause, allergies, and drug side effects.

2. It mostly affects women

The SSF states that nine out of 10 Sjögren’s patients are women, and the average age of diagnosis is the late 40s. However, the disease can impact anyone of any age, including men and children as well.

3. It causes extensive dryness

Sjögren’s Syndrome develops as a result of the body’s immune system attacking and destroying the body’s exocrine, or moisture-producing, glands. As a consequence, patients experience widespread dryness throughout their body, but especially impacting their eyes, nose, mouth, skin, vagina and joints.

4. It affects the eyes

The disease is often first detected as a result of eye-related symptoms. This includes dry, gritty eyes that feel like sandpaper when blinking and swollen tear glands. Dry eyes can in turn lead to blurred vision, infections, corneal ulcerations and blepharitis. Several of the eye tests that can be used to help diagnose the condition include a Schirmer test, to measure tear production, and a Rose Bengal and Lissamine Green test, to examine dry spots on the eye’s surface.

5. It affects the mouth, throat and nose

Sjögren’s also affects one’s mouth, throat and nasal cavity; the main symptom being dryness. This, in turn, leads to a whole host of other symptoms, such as mouth sores, dental decay, oral thrush (a yeast infection of the mouth), recurrent sinusitis, nose bleeds, heartburn, reflux esophagitis, and difficulty speaking and swallowing. Some physicians administer a lip gland biopsy as a part of the diagnosis process.

6. It impacts one’s joints too

As the immune system destroys the body’s moisture-producing glands, this results in a decrease in synovial fluid, which helps to keep the joints lubricated. This causes inflammatory joint pain and musculoskeletal pain, and can even lead to the development of rheumatoid arthritis, as shown through a positive Rheumatoid Factor (RF) reading in the blood. In fact, the main physicians who treat Sjögren’s are rheumatologists.

7. Neurological problems are also common

Sjögren’s causes a variety of nervous system symptoms, including nerve pain and peripheral neuropathy (a numbness and tingling in the extremities). Other neurological problems include difficulty concentrating and memory loss, often referred to as “brain fog”.

8. The prognosis of the disease varies

Patients may find that their symptoms plateau, worsen, or, uncommonly, go into remission. A French research study published in Rheumatology also found that early onset primary Sjögren’s Syndrome carried a worse prognosis over the course of the disease (‘early onset’ is defined as a diagnosis before age 35). While some Sjögren’s patients experience mild discomfort, others suffer debilitating symptoms that greatly impair their quality of life.

9. It can increase one’s risk of cancer

A German study found that Sjögren’s Syndrome moderately increases one’s risk of developing Non-Hodgkin’s Lymphoma (NHL). NHL is a cancer of the lymphatic system, which includes the lymph nodes, spleen, and other tissues. The lifetime risk of developing NHL by age 80 is 8% among men and 5.4% among women with Sjögren’s. This is compared to a risk of 1.6% of men and 1.1% of women in the general population.

10. There is hope

If you or a loved one has been diagnosed with Sjögren’s, check out the SSF’s video series, Conquering Sjögren’s, and their patient-published Self-Help Booklet. The foundation’s website, www.sjogrens.org, also contains a wealth of resources on the disease, including information about treatment options, survival tips, fact sheets, and even template letters for your health insurance company. You can also check out their extensive network of support groups.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share, and comment below!

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Top News in Autoimmune Disease – July 20, 2019

iMD Partners with the American Autoimmune Related Diseases Association (AARDA)

On July 17, 2019, iMD Health Global, a Toronto-based health technology company, announced that it has formed a strategic partnership with the American Autoimmune Related Diseases Association (AARDA). The partnership will help enhance communication between physicians and autoimmune disease patients to improve health outcomes.

iMD Health provides revolutionary technology to facilitate dialogue between physicians and patients inside the examination room. The iMD platform enables healthcare professionals to instantly access thousands of educational graphics, videos and resources at the point of care. The company’s platform is currently being used across Canada, and is now expanding across the United States as well.

Virginia Ladd, Executive Director & President of the AARDA commented, “With iMD, quick and easy access to a robust and visually appealing resource is now literally at the physician’s fingertips. With a better understanding of their conditions, patients can make informed and responsible decisions about managing their health and the required steps to address their condition.”

To read more about this exciting new partnership, click here.

Is There a Connection Between Adverse Childhood Experiences (ACE) and Autoimmune Disease?

Dawn Debois, a columnist on Lambert-Eaton News, explores the relationship between Adverse Childhood Experiences (ACE) and the development of autoimmune disease.

Debois has several autoimmune conditions herself, including Lambert-Eaton Myasthenic Syndrome (LEMS), psoriatic arthritis, Hashimoto’s thyroiditis, and ankylosing spondylitis. These conditions lead to her being diagnosed with multiple autoimmune syndrome.

Debois believes that the early childhood trauma that she experienced from losing her mother before the age of five and being placed into foster care may have triggered the onset of these autoimmune conditions. She completed a questionnaire that revealed that she had an ACE score of four, which is considered high, and is a high predictor of diagnosed autoimmune disease in adulthood, according to this study.

She further discusses the prevalence of the protein HLA-B27 in her blood, which can lead to a higher risk of developing certain autoimmune diseases. Therefore, while early childhood trauma may be an environmental factor affecting the pathogenesis of autoimmune disease, there are genetic factors as well.

To read more about Deb’s story and the link between Adverse Childhood Experiences (ACE) and autoimmunity, click here.

Actress Jameela Jamil Describes Life with Autoimmune Disease

British actress and model Jameela Jamil struggles with daily living with two chronic illnesses, including an autoimmune disease.

British actress and model Jameela Jamil took to Instagram this week to describe her struggle of living with an autoimmune disease. The 33-year-old suffers from Hashimoto’s Thyroiditis, an autoimmune disease in which one’s immune system attacks the thyroid gland, causing hypothryoidism (an underactive thyroid). This, in turn, can lead to symptoms such as weight gain, fatigue and depression.

Jamil wrote, “Living with an autoimmune condition is a real pain in the arse, and it irrationally makes you feel like a failure for not being able to “live it up” like other “normal” people. Shout out to all of us who struggle with this, and go through all of the incredible shitty days, and make it through each one. Even if it’s just by the skin of our teeth. We are LEGENDS for our strength of character.”

In addition to Hashimoto’s, Jamil also revealed that she has Ehler’s-Danlos syndrome (EDS) type 3. While this chronic illness is not autoimmune, in causes various painful symptoms, such as joint hypermobility, loose joints, poor wound healing and easy bruising. Like Hashimoto’s, there is no cure for EDS. Jamil confirmed her condition after a fan asked her why her arm was overextended in a photo on Twitter, then subsequently posted a video stretching her skin.

Jamil also described how hard it is to take care of herself, while others around her experience few health problems, even if they don’t care for their health. She wrote on her Instagram page, “Shout out if you are so fucking tired of having to protect yourself in a bubble while so many other people are able to just eat what they want, take drugs, stay out all night, drink a lot, take risks, do sports….etc. But you make one less than perfect choice and your day/week is ruined. The envy is real…I see you. I hear you. I feel you. I’m with you.”

To read more about Jameela Jamil and her fight against Hashimoto’s and EDS, click here.

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