I’m taking part in WEGO Health’s Health Activist Writer’s Month Challenge

Day 2 #HAWMC – Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

Sjogren’s Syndrome – Like me, you may have never have heard of it before you or a loved one was diagnosed. These are 5 things I think are important to know when learning about Sjogren’s.

1. Sjogren’s is an autoimmune disease of the moisture producing-glands of the body. It does not just affect the eyes and mouth. It can be a multi-system disorder, and affects many parts of the body including the eyes, sinuses, mouth, ears, throat, airways, joints, skin, kidney and liver. Related post: Venus With Sjogren’s Syndrome. Here’s an interview with another Venus, who helps all people with Sjogren’s by talking about the disease.
2. While there are formal standards of diagnosis, some people are diagnosed on the basis of their symptoms and their complete health history. Some rheumatologists (the specialists who treat Sjogren’s) believe that the diagnosis is not clinched if a person is seronegative, that is, they do not have positive blood tests for anti-nuclear antibodies (ANA) or antibodies to Ro or La (anti-Ro/SSA or anti-La/SSB). However, if you search online for ‘seronegative Sjogren’s’ you will find lots of people who don’t have these antibodies and have been diagnosed with Sjogren’s.  Related post: If it Looks Like Sjogren’s and Feels Like Sjogren’s, Then?
3. While there are treatments available for the systemic effects of Sjogren’s including Plaquenil, Prednisone and Methotrexate, some doctors acknowledge they don’t work very well.  In some cases, the side effects that are intolerable. For example, Plaquenil and Prednisone greatly exacerbated my existing depression. Related post: Refer to Dr Arthur Bookman’s talk presented by the Sjogren’s Society of Canada.
4. The impact on quality of life can be staggering. Related post: Working (or Not Working) With an Invisible Illness.
5. Most of the symptoms of Sjogren’s Syndrome can’t be seen. For example, debilitating fatigue and joint pain, which is usually non-swelling: you won’t see the redness or joint deformities that you might see in someone with Rheumatoid Arthritis. Related post: Fatigue and Invisible Illness.

Depression – Like me, you may have heard of depression, but did not recognize it at first when it happened to you or a loved one. There are lots of opinions around about depression and mental illness in general. These are 5 things I think are important to know when learning about depression.

1. Depression is a brain disorder. It is a real physical illness of the brain. It is not caused by moral or spiritual weakness, or by a universal law of attraction. You will find a great introduction to Brain Basics at the National Institute of Mental Health. Related post: Depression is a Physical Illness.
2. Anti-depressants are not ‘happy’ pills. The aim of anti-depressant treatment is to attempt to normalize brain neurotransmitters. This in itself can be problematic. The mechanisms are poorly understood, and what works for one person with depression doesn’t work for another. This means that finding the right medication can take time and patience and a lot of tweaking. However, if someone is suffering severe depression or is suicidal, anti-depressants are often the only way a person can progress to trying alternative therapies. Related post: Theories of Depression.
3. There are many alternative therapies to anti-depressants. Many of these treatments provide a lasting level of mastery over depression, which is essential for long-term recovery.  The ones I have tried include cognitive-based and other talk therapies, mindfulness and meditation, self-compassion, self-help courses and books, vitamin B6, St John’s Wort, 5-HTP, nutrition, yoga, exercise, reiki, qigong, aromatherapy, massage, acupuncture, homeopathy, and more. Over the years, I have needed a combination of traditional antidepressants and some of these alternatives to recover from the severest episodes of depression. Related post: Mental Illness Research is Failing Us.
4. Being depressed does not mean a person is crying and emotional all the time. Depression can mean you shut down your feelings in order to cope and function normally in the world. It means it can be very difficult to talk about. Being able to listen without judging or offering opinions is is a great gift to a person with depression. Related post: When I Can’t Talk About It.
5. When you are depressed, you can form a set of beliefs that are far removed from the truth, but become almost absolute. The misery and despair these beliefs generate is real. It is not something you can snap out of. In severe depression, these beliefs can take a long time to dismantle and replace with kinder and more compassionate beliefs. Telling someone to ‘snap out of it’ or to ‘stop being depressed’ are not only useless admonitions, they can actually contribute to the sufferer’s feeling of alienation and despair. Related post: Dark Matter.

Blessings,
Jane