Young Autoimmune Patients Raise Awareness Amid COVID-19 Pandemic

As the COVID-19 pandemic continues to spread across the globe, young patients with autoimmune disease and other chronic illnesses are using the hashtag #HighRiskCovid19 to raise awareness about their conditions.

Although many media outlets and government officials have stated that young individuals need not worry about the coronavirus, and that it’s primarily older individuals who are the most at risk, immunocompromised young people are telling their own story. Whether they take immunosuppressants for their condition, or are at risk due to the nature of their chronic illness, these patients are asking their peers to keep them in mind when they consider venturing out instead of remaining in self-isolation.

Brittania, a 20-year old young woman from Jamaica, tweeted: ‘Hi, I’m 20 and I have Systemic Lupus Erythmatosus (SLE)/Lupus Nephritis. I take immunosuppressants to keep my body from attacking itself. I’m amongst those who have to self-isolate to stay healthy for a majority of this year. So please keep me/others in mind when you think you ‘can’t stay in’.

Sarah Elliott, from San Francisco, California, added: ‘I have multiple sclerosis (MS) and take an immunosuppressant drug for it. I also have severe asthma and take a controller medication as well. I have 2 kids and I would love to watch them grow up. Please help protect us!’

Nancy Mendoza, an autoimmune patient with Rheumatoid Arthritis (RA), also tweeted: ‘I’ve been on immunosuppressing meds for 15 years for rheumatoid arthritis. Stay home. Flatten the curve. People like me are depending on you.’

Others decided to use the trending hashtag to raise awareness on behalf of a loved one with a chronic illness. A man from Medicine Hat, Alberta, Canada, for example, implored: ‘This is my wife. She is on immunosuppressive infusion therapy battling ulcerative colitis and rheumatoid arthritis. She is among the high risk during this COVID-19 pandemic. I’m putting a face to the most vulnerable. TAKE THIS SERIOUSLY.’

Personally, I am also taking greater precautions as the coronavirus spreads further into our communities, since I take immunosupressant medication for Sjogren’s Syndrome and Hidradenitis Suppurativa. I also have asthma, which puts me at a greater risk for serious pulmonary complications, like pneumonia, since the virus is respiratory in nature. Thankfully, I’m able to work remotely, limiting my exposure to others, and my husband has taken on any duties that require us to set foot outside, including grocery shopping.

Do you or someone you love have an autoimmune disease, and are therefore at a greater risk for complications associated with the coronavirus? If so, please comment below and let us know how you’re handling this public health scare as a #HighRiskCovid19 patient.

Practicing Gratitude When You Have a Chronic Illness

Gratitude doesn’t change what we have in front of us; it changes the way we see what we have

Anonymous

This past Thursday was Thanksgiving here in the United States. I spent the day with my husband’s family and I couldn’t be more grateful to have them close by when I’m far away from my own family.

This got me thinking about practicing gratitude in general. How often do we really give thanks for what we have? Only once a year, when Thanksgiving rolls around? Or are we only thankful for what we have when we’ve lost it (in other words, when it’s too late)?

When you have an autoimmune disease or any other type of chronic illness, it can be challenging to feel grateful for what you have. I mean, how could I feel thankful for having near-constant joint pain, fatigue, widespread dryness, skin issues and brain fog, among other symptoms of Sjogren’s Syndrome and Hidradenitis Suppurativa (HS)?

But, if I challenge myself to think harder, I can actually think of many ways in which I should be grateful for what I have. Many people, especially those who are less fortunate or who live in developing countries, don’t have access to a reliable healthcare system, including adequate treatment options, necessary medications, and educated health care professionals. Even here in the United States, many people with chronic illness struggle to afford their medications, health insurance or co-pays for doctor’s visits. While I am by no means rich, I’m thankful that I have the ability to take care of my healthcare needs when many people cannot.

Another thing that I’m grateful for is the amazing chronic illness community that I’ve connected with in the past two years of blogging on this site. Having a chronic illness can sometimes be lonely, and you may feel like no one understands what you’re going through (especially if none of your family or friends have a disease themselves, or if you don’t have a satisfactory support system). However, by connecting with others on WordPress, Instagram and Reddit who are in a similar situation, I’ve quickly realized that I’m far from being alone, and I’ve learned new methods of self-care that have helped me manage my illness.

Thanks for reading this blog post! If you’re an Autoimmune Warrior, what are you thankful for (that you may have forgotten to be grateful about)? Comment below and let me know!

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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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