Looking back on my life, I distinctly see times where I experienced lupus flares and remissions, despite a lack of a proper lupus diagnosis. The flares always involved a visit to some doctor, who inevitably could not find a reason for my mystery symptoms. One particular doctor declared I was depressed, even though I disagreed. Yet, this doctor sent me home with a month supply of antidepressants. She said, “I’ll give you your first month of drugs free”. I left there with my paper bag of drugs, feeling gross and icky, like I had just been pedaled by a drug dealer. I hastily dropped the bag of drugs in the closest trash can and chalked up another doctor visit as a waste of time. I would bet money that multiple doctors have written some form of “crazy” in my patient charts.
Flash back to the winter of 2005. I noticed some of my toes had a suspicious, purplish rash. My toes looked like I bruised them. After a week and the rash had not improved, I reluctantly made another doctor appointment, but this one changed my life. My primary care doctor took one look at my toes and started writing notes, then she said something I will never forget. She said, “It’s good that you came to see me about this. I’m going to run some test.” A doctor has never praised me for visiting them. I usually get the opposite feeling from doctors of, ‘oh you again, what is it now…’ But this time, my perseverance paid off.
A couple of days later, the doctor called me and said that I tested positive for lupus. What? (Pause for freak out…) The only thing I knew about lupus was from watching the movie Gross Anatomy, and the doctor who had lupus, in the movie, died from the disease. Still on the phone with the doctor I went into zombie mode as she explained that my blood test came back with a positive ANA (anti-nuclear antibody) and she was referring me to a rheumatologist.
Forward to my 1st rheumatologist visit:
I was an anxious mess, while I sat quietly, pretending to be calm and normal in the waiting room. I felt like a pressure cooker inside an eggshell, ready to burst into tears as I ran out of the building. Before the visit, I had diligently done extensive internet research about lupus. It all started making sense: the constant exhaustion, muscle weakness and pains, achy joints, chest pains, photosensitivity, skin rashes, etc. Lupus is an autoimmune disease, where the immune system attacks one’s own body. Despite my fears, I shamefully admit now that I kind of wished I did in fact have lupus. I know that sounds really twisted, but I was so desperate to finally have an answer to what was going on with my body.
Meeting the rheumatologist was a disappointment, unfortunately. It is highly probably she wrote “borderline crazy” in my patient chart. Imagine my shock when she didn’t want to diagnose me with lupus right away. (But my primary care doctor said I tested positive???) I couldn’t hold back tears as I shared with her all the symptoms I was experiencing. The rheumatologist explained it would take a while to see if I did in fact have lupus; extensive blood and urine tests were ordered. I learned that a diagnosis of lupus involves having symptoms of lupus in conjunction with a positive antinuclear antibody (ANA) test result. However, a positive ANA test alone would not necessarily confirm that I had lupus. I left there mortified and once again frustrated. I had no choice but to wait for the lab test results and a follow up visit with the rheumatologist.
So let’s discuss lupus symptoms and what I was experiencing. The following list is from the Lupus Foundation of America:
• Extreme fatigue (yes, unfortunately)
• Headaches (yep)
• Painful or swollen joints (check)
• Fever (no)
• Anemia (check)
• Swelling (edema) in feet, legs, hands, and/or around eyes (no)
• Pain in chest on deep breathing (yes)
• Butterfly-shaped rash across cheeks and nose (no)
• Sun- or light-sensitivity (photosensitivity) (check)
• Hair loss (no)
• Abnormal blood clotting (no)
• Fingers turning white and/or blue when cold (Raynaud’s phenomenon) (absolutely yes)
• Mouth or nose ulcers (occasionally)
Based on the above list, I had eight of the lupus symptoms. Those in combination with a positive ANA, was enough to diagnose me with lupus. FINALLY, an answer (mental cartwheels). As soon as I got this news, I phoned my mother. I distinctly recall saying, “I have lupus. Isn’t that great? I’m not crazy”. I have systemic lupus erythematosus (SLE), meaning it affects any of my organs.
I’d bet the majority of lupus patients have felt crazy more than a few instances. In addition, family, friends, and doctors have undoubtedly labeled lupus patients as some form of crazy, prior to a proper diagnosis. The intense frustration over medical test results showing nothing conclusively wrong, is enough to make you bonkers. Plus the elusive lupus symptoms threaten to drive you mad.
Let me be the first or the fifteenth person to declare, “You are not crazy”.
Lupus is often referred to as the “designer disease”. The reason being that each person with lupus experiences their own unique symptoms and complications. The challenges of one lupus patient may be completely different from another person with lupus. This is why it’s imperative you listen to your own body, you trust yourself, and you develop good rapport with your doctors. Most importantly, don’t give up! Persevere until you get answers. If you are diagnosed with lupus, you can live a long, productive, tap-dancing happy life.
Thank you for sharing this blog post…it gives me hope. I was diagnosed with autoimmune thyroid disease a couple of years ago and there seems to be an autoimmune storm building up in my body…although I think this all started a long time back now. Since a young age I have had a butterfly rash that comes and goes across my cheeks and nose, extreme cold sensitivity in my fingers and toes, rashes/blisters that appear on my knuckles and I suffered a lot with recurrent mouth ulcers.
It wasn’t until a few months ago (aged 29) that I’ve started to fit all of these pieces of the puzzle together. My GP tested my ANA’s earlier this year and they were positive! I subsequently found out that my gran’s sister had Lupus (SLE) which sadly caused her to die in her early twenties…unfortunately it was poorly recognised back then and there weren’t many treatment options.
My health is deteriorating rapidly and I’m now having issues with breathing, lung capacity, walking and I have been suffering from seizures, horrendous headaches, spinal/joint/muscle pain, and muscle spasms…to name just a few symptoms! Only now (after many year’s of feeling rubbish and suffering unexplained ailments) are doctor’s starting to treat me with more respect and take me seriously although I still don’t have an “official” diagnosis yet. I find that documenting and keeping a diary of my symptoms, photographing my rashes and blisters during flare ups, and videoing my seizures has helped as I can share these with my doctors. No longer can they deny that I have serious autoimmune issues!
I have my next rheumatology follow up on 12th October and I hope that my list of documented symptoms, videos and photographic evidence of rashes might be enough for them to finally diagnose me and get me on the correct treatment path…
It’s crazy that when you are so ill you are faced with having to prove your illness to the professionals…it’s like taking some kind of “Is she just crazy or is she really ill?” exam. It’s exhausting when you’re already physically and mentally exhausted and in extreme amounts of pain!
I hope you are doing well (and your mum’s dog too) and are flare free. I’m glad I found your blog…please keep sharing!
Aimee, thank you for reaching out to me. It means a lot. I am sorry to hear all that you are going through. However, I can tell you are a fighter, which will enable you to rise above you pain and symptoms and embrace life despite your autoimmune illness(es). I pray your next rheumatology visit goes well on the 12th.