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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Evidence of Autoimmune Response in Patients with Autism; Family of Woman with Scleroderma Seeks Financial Support

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.

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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