The Road to Autoimmune Disease Diagnosis

The Road to Autoimmune Disease Diagnosis


My Experience With Getting An Autoimmune Disease Diagnosis


I get asked about my autoimmune disease a lot. New doctors ask me how I was diagnosed. Family members ask about my diagnosis and fellow parents and friends ask how I knew I had an autoimmune disease. I’ve had new friends – who didn’t know me “before” – say they wondered when I got sick since I seem to cope well.


Truthfully, I have no choice but to cope well. I have two young kids and I don’t want my illness to affect them. And really, what is the alternative? Am I supposed to lay in bed all day crying over my fate? That would be a pretty sad existence. I prefer to keep living and show my kids how tough their mama really is – although they are relatively unaware of my autoimmune disease.


The thing about many autoimmune diseases is that they tend to be “invisible illnesses.” So, while my body is constantly attacking itself on the inside, on the outside, I look like a perfectly healthy, frazzled mom with two kids. My oldest is vaguely aware that mama is sick. He knows that mama has “ouchies” and that mama takes a lot of medicine. My youngest is three so he is pretty much unaware of my condition.

You never know what battles people are going through. Invisible illnesses are just that, invisible.


April is Spondylitis Awareness month, so this seems like a good time to share how I got to my diagnosis. Everyone’s journey is different and I remember seeking out everything I could find on my condition and autoimmune diseases in general when I was diagnosed.


I recently read a post from another person with Ankylosing Spondylitis who shares how her diagnosis made her strong. I have to agree. I always thought I was a strong person, but having a chronic, degenerative disease has really pushed me to find strength I never knew existed. Truth be told, I’m glad it’s me, rather than other members of my family since I know I am better equipped to handle it. I have always had a “power through it” mindset so living with an autoimmune disease just makes me power through more than I ever thought was possible.



Before the Autoimmune Disease

I was always very healthy. I used to get annoyed that I had to pay for medical insurance that I never used. The only time I visited doctors was for tension headaches or allergy medication.


That being said, I used to have terrible growing pains as a child. Also, in my early twenties, I had to leave a retail job because I was struggling with back pain from lifting boxes. I went to physical therapy for a few sessions and I was fixed. I also had to quit Tae Kwon Do when the kicks were getting to be too much for my back.


Otherwise, I was a healthy person. I ate really well since I was constantly dieting to keep up with the Los Angeles body ideal. I exercised frequently. Aside from staying out late on weekends and maybe drinking too much socially, I was the picture of health. My only other flaw was that I was a super type A person in a really stressful field so I was constantly under stress.


I got pregnant with my oldest when I was thirty four years old. I had a really easy pregnancy, aside from terrible morning sickness throughout the pregnancy. I only gained 20 pounds as a result of my crazy morning sickness. My delivery was rough since my son turned during delivery and I was in labor for 22 hours, but otherwise, pregnancy and childbirth weren’t too traumatic.


When my son was around five months old, I started having really terrible back and hip pain. I went to my general practitioner and she said that was a common problem with new moms so she wrote me a prescription for physical therapy. In three months of physical therapy, the pain got worse, not better. However, I was busy with work and a new baby so I ignored it and just dealt with the pain…until my hair fell out.


One day, while getting ready to go out with my friends, I noticed a four inch bald spot on the side of my head. It was covered pretty well with my hair that I had never noticed it before. I freaked out and made an appointment with my general practitioner immediately.


She took one look at my bald spot and said, well, you have Alopecia, which is an autoimmune disease, so I’m guessing your hip and back pain is also an autoimmune disease. She ran blood work and took an x-ray of my back and hips.


A few days later, I got a life changing voicemail: “Hi Kathy, this is doctor Y, your blood work came back and you definitely have an autoimmune disease, maybe Lupus. I’ll be out of town for the next two weeks so make an appointment to see me when I get back and go ahead and schedule an appointment with rheumatology.” I’m fairly certain my heart stopped. To be fair to my doctor, she is very matter of fact, which I normally appreciate. That being said, that was a pretty horrible voicemail to leave, particularly since I wouldn’t be able to get additional information for two weeks!


Pick An Autoimmune Disease, Any Autoimmune Disease

Hearing my doctor say I maybe had Lupus was devastating. I remembered reading an article in Glamour magazine years ago about a woman who almost died during pregnancy because her Lupus flared and her kidneys stopped functioning. I also had a client whose daughter was diagnosed with Lupus when she was 12 and she was already on her second kidney transplant at 32. And of course, there was the “One Life To Live” character who had Lupus. None of these were good outcomes!


When my doctor returned, she ran more blood work to try to determine which autoimmune disease I had. In case you don’t know what an autoimmune disease is, it is a condition where your immune system decides healthy cells are foreign so it attacks healthy cells in your body. There are as many as 80 autoimmune disease and some people just have combinations of autoimmune diseases. Finding the right diagnosis can take time.


Thankfully, one of the tests ruled out Lupus and it seemed that my autoimmune disease was centered on my spine and hips. My general practitioner had done what she could do so the next step was to meet the rheumatologist, who would hopefully diagnose me and would direct my treatment plan.


Waiting for a diagnosis was stressful. We were coming up on my son’s first birthday and my hair was starting to grow back, thanks to steroid injections in my scalp but not knowing what the future held was terrible. I also was at a point where it was really difficult to carry my son. Thank goodness he was an early walker!


Visit part two of my diagnosis journey to find out what happened post diagnosis.



What it's like to receive a life-changing autoimmune disease diagnosis.

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