What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

Women and Autoimmune Disease: Combating Gender Bias in Medical Treatment

A female jogger runs outside to exercise good health for autoimmune disease

Happy International Women’s Day! In honor of this day, I wanted to share a blog post specifically about women and autoimmune disease.

Women Suffer from Autoimmunity More than Men

According to the American Autoimmune and Related Diseases Association (AARDA) almost all autoimmune diseases are more prevalent in women than in men. For example, with the autoimmune condition systemic lupus erythmatosus (SLE), 9 out of 10 patients are women. Why is this, and what unique challenges does being a women present in the diagnosis and treatment of autoimmune disease?

Women Are More Vulnerable to Autoimmune Disease

According to a groundbreaking study from the University of Gothenberg, due to hormonal influences, women are more vulnerable to autoimmune diseases than men. The study found that the male sex hormone testosterone provides protection against autoimmune disease. Since men have ten times more testosterone than women, they have more protection from rogue immune cells than women.

The study explains that testosterone provides protection against autoimmune disease by reducing the quantity of B cells in the body. B cells are a type of lymphocyte (immune cell) that releases harmful antibodies. Testosterone provides protection against B cells by suppressing BAFF, a protein that makes B cells more viable. When testosterone is eliminated, the result is more BAFF, and thereby more surviving B cells in the spleen.

This is why testosterone is critical to the prevention of autoimmune disease, and why women are more vulnerable to autoimmunity due to having less of this hormone.

Challenges Women Face in Diagnosis and Treatment of Autoimmune Disease

Women face an uphill battle when it comes to the diagnosis and treatment of autoimmune disease. According to Penney Cowan, Chief Executive of the American Chronic Pain Association, physicians tend to dismiss women’s pain more than they do men’s. Women are often told that the pain is ‘all in their head’, or, in the case of gender-specific conditions, such as endometriosis, that the pain is just a ‘normal part’ of being a woman. Other research has found that physicians are more likely to attribute women’s pain to psychosocial causes, like stress or family issues, while attributing men’s pain to an underlying physical problem. Medical professionals also order more lab tests for male patients presenting similar symptoms as compared to female patients.

Diane Talbert, an African-American woman from Virginia, spoke to over 10 physicians for over a decade about the pain she suffers from psoriasis, an autoimmune condition of the skin, that she’s had since childhood. However, her complaints were dismissed as psychological or attributed to menopause. It wasn’t until she was in so much pain that she could no longer lift her arms above her head, that a Rheumatologist diagnosed her with Psoriatic Arthritis, a painful autoimmune disease that affects about 15% of patients with Psoriasis.

A Harvard Medical Review piece titled Women in Pain: Disparities in Experience and Treatment further explored the frustrations women experience when trying to get a diagnosis and treatment. The author cites evidence that while 70% of chronic pain sufferers are women, 80% of all pain studies are conducted on male mice or men! Since women also experience different symptoms than men, such as in the case of heart attacks, physicians are also less likely to recognize the condition in women, and may prematurely discharge a woman who has just suffered a heart attack, since she’s not presenting the symptoms a man normally would.

The author also points out that because autoimmune diseases like multiple sclerosis, rheumatoid arthritis and other connective tissue conditions are chronic in nature, they’re not likely to just ‘go away’ on their own, and require active treatment to prevent further damage to one’s tissues. That’s why, if a woman doesn’t get a diagnosis due to gender bias, the consequences could be dire to her health.

Combating Gender Bias in Medical Treatment

So, what can we as women do in order to combat gender bias that medical professionals have against us? As I discuss in the blog post When Your Doctor Doesn’t Believe You, the key to ensuring you get the medical treatment you need is to stand up for yourself and be as assertive as possible. Another tip that I’ve found over the years is to bring someone else with you to your appointments that can be your advocate – someone who can attest to the fact that you’re no longer able to do the things you used to due to your medical issues. While it’s unfortunate that we as women have to rely on others to advocate for us, sometimes this is the anecdotal ‘evidence’ that a physician needs to hear in order to take our plight seriously. If your doctor still doesn’t budge, then find a new provider who will actually help you get the treatment you need and deserve.

Do you believe that you’ve experienced a medical bias when getting a diagnosis or treatment for your autoimmune condition? Please share your experience by commenting below!

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How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.