In honor of Jessica - Diagnosed Age 24
My daughter was diagnosed with lupus in 2015 after 5 years with a misdiagnosis and rapidly worsening symptoms. Prior to her getting sick, neither of us had ever heard the word lupus (let alone it’s full name systemic lupus erythematosus). Since then we have spent countless hours in doctor's offices, having (sometimes invasive) tests run and procedures performed...ridiculous amounts of money paying for treatments, ER visits and hospital stays...she has had days (sometimes weeks) at a time bedridden from bad flares...
Initially, my daughter felt a lot of shame in being so sick at such a young age, which only served to further isolate her from those around her. There were times when she just wanted to give up because she had become a prisoner in her own body. She felt completely alone in her struggle. Sadly, her story is not uncommon. There are millions of people right now who are either silently suffering with this disease, or living with the symptoms/trying to get a diagnosis while doing their best to cope with the realities of deteriorating health. And it is by no means an easy road even after receiving a diagnosis. My daughter's life is drastically different than she ever thought it would be; she has had to deal with the fact that - at times - her body will not allow her to do the things she wants it to do, and that she has no clue what each day is going to bring in terms of symptoms. It is unpredictable and extremely frustrating, to say the least.
As a parent, I remember our first visit at Johns Hopkins University with such great clarity. 5 minutes into our appointment with the doctor, she looked at my daughter and said, "You have lupus." I remember going home and just crying that day.
I did learn something incredibly important from the doctor at that first visit - she told me that from that point on, my daughter should never go to a doctor's appointment alone. She needs support, and advocacy when necessary, to fight this disease. I often say that we are in this together, because I won't let her go it alone. For those of you with a loved one fighting this disease, step one is to learn all you can about lupus; step two - be there.