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.

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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Top News in Autoimmune Disease – June 15, 2019

Girl with Autoimmune Disease Creates Teddy Bears that Hide IV Bags

Medi-Teddies are designed to hide IV bags for children receive intravenous treatments

Ella Casano was diagnosed with an autoimmune condition called Idiopathic Thrombocytopenia Purpura (ITP) when she was just 7 years old. ITP is known to cause low platelet levels, excessive bruising and bleeding.

Now 12 years old, Ella receives IV infusions every 8 weeks to ease the symptoms of her condition. As part of a class project, she had to come up with a business idea, and, thinking about her experience with IV infusions and how scary the medical equipment can look to children, she came up with the idea of the “Medi-Teddy”, a teddy bear that hides IV bags.

Ella’s family started a GoFundMe page to raise $5,000 to provide 500 Medi-Teddies to kids in need. For more on this story and to learn how you can donate, click here.

British Columbia Mother Sues Over Breast Implant Risks

Samara Bunsko is involved in a class action lawsuit alleging her breast implants made her sick.

Samara Bunsko, 28, of Maple Ridge, British Columbia, Canada, is suing breast implant manufacturer Allergan over allegations that her implants caused her to develop various health issues, including hair loss, irregular thyroid and iron levels, headaches, fatigue and cysts.

Samara is the lead plaintiff in two proposed class action lawsuits against breast implant manufacturers, alleging that they did not disclose the risk of developing certain cancers or autoimmune diseases as a result of the implants.

Dr. Jan Tervaert, Director of Rheumatology at the University of Alberta’s School of Medicine, says that research shows that patients with a genetic predisposition for autoimmune disease have the highest risk of developing symptoms. Furthermore, patients who have had implants the longest are the least likely to experience a cessation in their symptoms once the implants are removed.

Health Canada is conducting a safety review of systemic symptoms caused by breast implants, including the development of autoimmune conditions. To learn more, click here.

Amy Hoey has five different autoimmune diseases, none of which have a cure.

Woman Describes her Experience with Multiple Autoimmune Diseases

Amy Hoey was a young teen when she began to experience a myriad of symptoms, including severely dry skin and body aches. She was told by professionals that she was likely just experiencing eczema and growing pains, when in fact, she had an autoimmune condition called psoriasis. Psoriasis can affect the joints and develop into psoriatic arthritis, which is what happened to Amy.

Later, Amy began to experience extreme fatigue, hair loss, kidney infections and chest pain. She went on to receive a diagnosis of Hashimoto’s thyroiditis, an autoimmune condition in which the immune system attacks the thyroid gland.

She started to experience even more symptoms, including a butterfly-shaped rash on her face, mouth ulcers, and memory loss, which lead to the diagnosis of systemic lupus erythematosus. Lupus causes damage to the body’s internal organs, skin and joints.

To top it off, Amy also has celiac disease, an autoimmune disease in which the body’s immune system damages the small intestine in response to consuming gluten, the protein found in wheat.

Amy felt like she constantly had the flu. Worse still, the physicians she worked with seemed to know little about autoimmune conditions, and one even Googled her conditions in front of her! She also has had allergic reactions to medications used to treat autoimmune disease, and also has a genetic condition that makes her more susceptible to infections, which can be a challenge, since many autoimmune treatments work by suppressing the immune system.

Amy says her best advice is to focus on what you can do, not what you can’t do. While she had a difficult time accepting this at first, since she used to be an athlete, maintaining a positive attitude and working with a knowledgeable rheumatologist have been helpful for her treatment.

To read more about Amy’s story, click here.



Top News in Autoimmune Disease – June 1, 2019

Dr. Dale Lee is the Director of the Celiac Disease Program at Seattle Children’s Hospital

Youth Take On Celiac Disease Through Outreach Program

Last month was Celiac Disease Awareness Month. While Celiac is one of the most common autoimmune diseases, experts at the Seattle Children’s Hospital estimate that for every diagnosis, eight cases are overlooked.

As a result, the hospital has put together an outreach program that allows youth with Celiac disease the opportunity to raise awareness, organize support groups, and mentor other youth with the disease.

There are currently 11 youth members on the Celiac Youth Leadership Council (CYLC), and one of their current initiatives is running a gluten-free food drive for a local food bank.

The most common symptoms of Celiac disease include abdominal pain, diarrhea, constipation, weight loss, nausea, and fatigue. Other symptoms include anemia, joint pain, arthritis, osteoporosis, peripheral neuropathy, seizures, canker sores, skin rashes, fatigue, depression and anxiety. In children, the disease can also cause irritability, stunted growth, delayed puberty, and dental damage.

To learn more, click here.

Asaya Bullock (left) pictured here with his sister, is in grave need of a bone marrow match

7-year-old with Rare Autoimmune Disease Needs Life-saving Bone Marrow

Asaya Bullock, a 7-year-old boy from New York, is searching for a donor willing to donate matching bone marrow.

Asaya was born with a rare, life-threatening autoimmune disease called IPEX syndrome. Symptoms include joint pain, body aches, memory loss, fatigue and stomach problems. Doctors said he had two years to live, but, miraculously, he is still alive seven years later.

A bone marrow transplant would greatly help Asaya’s condition; however, since he is of mixed ancestry (part African part Caribbean), finding a matching donor is proving to be a challenge. According to Be the Match, an organization that operates the world’s largest bone marrow registry, the more genetically diverse an individual is, the more difficult it is to find a matching donor.

To learn more about Asaya’s story and how you can join the Be the Match registry, click here.

Monique Bolland describes her harrowing journey living with Multiple Sclerosis (MS)

Australian Woman Describes Her Journey with Multiple Sclerosis

Monique Bolland, 36, from Australia, shares her story living with Multiple Sclerosis (MS).

Bolland was first diagnosed with this incurable autoimmune disease when she was just 22. At the time, she didn’t quite comprehend the severity of her diagnosis.

She says that she first realized how bad her MS symptoms were when she was cutting bread and accidentally cut her hand, but didn’t even notice as a result of the nerve damage and numbness caused by the disease.

MS impacts an estimated 2.5 million people worldwide, and 70% of MS patients are female. Symptoms include impaired motor function, numbness, fatigue, heat sensitivity, optic nerve damage, and more.

Bolland says that living a healthy lifestyle is imperative to managing her MS symptoms. This includes consuming a diet rich in vitamins D, B12 and omega-3 fatty acids, reducing stress and inflammation, and staying active. She also gets monthly injections of Tysabri, an immunosuppressive drug. In addition, she launched a nutrition supplement and health product line called Nuzest with her father, which supports MS research.

To learn more about Bolland’s story, click here.

Actress Nicole Beharie reveals autoimmune disease caused her exit from hit show

Actress Nicole Beharie Exits Show due to Autoimmune Disease

Nicole Beharie, famed actress on Fox’s hit show, Sleepy Hollow, confessed to fans on Instagram that she left the show abruptly as a result of an autoimmune disease she has been keeping secret for the last five years.

Although Beharie didn’t reveal the exact autoimmune condition she has, she states that it caused her to experience skin rashes and fluctuations in her weight. As a result, her character on the show, FBI agent Abby Mills, was killed off in the season 3 finale, allowing her to take a much-needed break for her health.

Beharie says setting boundaries and limitations, as well as changing her diet, were key to improving her physical and mental state.

To read more about her story, click here.

Travis Frederick missed an entire NFL football season as a result of his autoimmune disease

Dallas Cowboys Frontman Tackles Autoimmune Condition and Injuries

Travis Frederick, the Dallas Cowboys’ all-star center, revealed that he suffers from an autoimmune condition called Guillain-Barre syndrome. This caused him to miss playing an entire NFL football season, while a backup played in his place. He also revealed he had two surgeries during this time.

Frederick is now expected to return to the starting lineup this upcoming season. However, since he is still experiencing lingering effects of Guillain-Barre, he is being brought back on to the field slowly.

To learn more about Frederick’s story, click here.

Top News in Autoimmune Disease – May 15, 2019

Type 1 Diabetes Patients Drive to Canada for Affordable Insulin


Lija Greenseid of Minnesota holds up insulin for her 13-year-old daughter that she purchased from Fort Francis, Ontario during an organized caravan ride to Canada. 

Type 1 Diabetes is an autoimmune disease in which the body’s immune system attacks and destroys pancreatic cells, rendering them incapable of producing insulin. Insulin is a hormone that the body needs to get glucose from the bloodstream into its cells. As a result, patients with Type 1 Diabetes rely on prescription insulin in order to survive.

Unfortunately, for the majority of Americans, the cost of life-saving insulin keeps going up year after year. As a result, Quinn Nystrom, from Minnesota, organized a caravan to Canada to fill her prescription for insulin, where it sells for a fraction of the cost.

As reported by the Canadian Broadcasting Corporation (CBC), insulin costs significantly less in Canada, thanks to the Patented Medicine Prices Review Board, which sets limits for the maximum price that can be charged for patented drugs. As a result, a vial of insulin that costs $300 in the US is only $30 in Canada, even when it comes from the same brand.

Many patients who cannot afford their medication will ration their insulin. Unfortunately, as a result of not taking the required minimum dose, patients who ‘ration’ their insulin can die.

That’s what happened to Alec Smith-Holt, a 26-year-old man from Minnesota who died in 2017 when he couldn’t afford $1,300 in insulin, and decided to ration his remaining supply. His body was discovered five days later. His mother, Nicole Smith-Holt, joined the caravan to Canada as a symbolic gesture in memory of her son.

To read more about this story, click here.

Executive Gets Purple Mohawk to Benefit Kid with Autoimmune Disease

Cayden Krueger, a young patient with ITP, poses with John Stevenson, who is supporting his Pump it Up for Platelets campaign.

Cayden Krueger, from Madison, Wisconsin, was diagnosed with thrombocytopenia purpura (ITP) when he was just 6 years old. ITP is an autoimmune disease that causes patients to have too few platelets in their blood, resulting in easy bruising and bleeding. Cayden has been raising awareness about ITP by launching a Pump it Up for Platelets fundraiser and sporting a purple mohawk.

When John Stevenson, a Senior Director of Financial Services at US Cellular, heard about Cayden’s story, he challenged his employees to raise money for the Pump it Up for Platelets fundraiser, and pledged to get a purple mohawk himself if they could meet a $1,000 goal. His team ended up raising $2,000, so Stevenson found himself with a new hairdo, and Cayden even got to make the first cut.

To read more about this story, click here.

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