Lisa Marie Basile finds living with an auto-immune disease frustrating. She also had a hard time getting a diagnosis because, as she says, “…many autoimmune disorders don’t come with a neon ‘Here I am!’ sign.” It took Lisa years to be correctly diagnosed with ankylosing spondylitis, or AS, leaving her wondering what her future with the disease held. AS is a form of arthritis that causes inflammation of the spine, and can also affect other joints.
The American Autoimmune Related Diseases Association reports autoimmune diseases affect an estimated 23.5 million Americans, most of them women. Of the 80 – 100 known diseases, all are chronic, and some can be life threatening. And what’s even more disheartening taking immunosuppressant drugs can lead to major side effects.
Because AS causes inflammation throughout the body, Lisa has constant joint pain and she sometimes develops uveitis which causes severe eye pain. If that wasn’t enough, the steroid drops she uses are known to cause cataracts. Lisa maintains a good attitude, and can joke about her trials and triumphs, but she admits the road hasn’t been easy. Prior to her diagnosis, many doctors dismissed her symptoms as being “all in her head.” According to the Hospital for Special Surgery, Lisa isn’t alone in her perception: “Diagnosis can take several years, especially when symptoms are not taken seriously and/or the patient is made to feel by his or her friends or family that the symptoms are all ‘in one’s head,’ contributing to patients feeling uncertain about their own symptoms and questioning their knowledge about their own bodies.”
For Lisa, blood tests were not conclusive, and it wasn’t until she had a CT scan for an unrelated condition that her AS was discovered. Suddenly, everything made sense–there was a real cause for the pain and fatigue she’d been dealing with for so long.
Some people with autoimmune disorders can go for long periods of time without showing any symptoms, and then they’ll have a flare-up, and they find their friends and family are confused. Autoimmune diseases are silent attackers, and because joint pain can’t be seen, patients endure a lack of understanding and empathy from those they are closest to. Compounds the suffering by creating feelings of rejection, isolation, and loneliness. Lisa urges others to learn about rare diseases. She says, “There’s no harm in telling those closest to you what you experience, just as there’s no reason why you shouldn’t read up on what someone you know might be going through.”
Share this story to someone you know who had a hard road to diagnosis. Show them they are not alone.
Read to see Lisa’s full story from her perspective on The Gloss.
