Maya Angelou said, “People will forget what you said, people will forget what you do, but they will never forget how you made them feel.”
I got an email a few days ago from someone asking me how I was diagnosed with my autoimmune diseases, what initial tests were run, etc. As I replied to her email I was transported back to all the doctor appointments prior to my diagnosis. The doctors didn’t believe me, they didn’t listen to what I had to say (nor cared), they thought it was all in my head, they looked down on me because I was young, etc, etc, etc…
Responding to that email made me realize I’ve never opened up about that part of my journey, and I’ve never dealt with the emotions I tried to forget long ago.
Anger, bitterness, rage, isolation, resentment, anguish, misery, sorrow, torment, grief…
I wrapped up all of my emotions in a box with a pretty little bow, because ugly things always look better wrapped in great packaging. I hid my box away because I was ashamed of it. Ashamed to deal with it. Scared to deal with it. I didn’t want to deal with it.
But I think I’m ready now.
Getting a diagnosis of psoriatic arthritis took several years, and several doctors.
In 1994 (I was 14) a rash developed on the back of my head and on other various places of my body. Our family doctor in Kodiak ran blood tests and also took a biopsy of the rash from my side, along my outer rib cage (right where the band of my bra is). The chunk of flesh they took was about a 1/4 inch deep and a 1/2 inch wide. I really don’t know much about biopsies, but I look back and think that much was excessive. It hurt like hell, and I still have a scar.
Nothing ever came out of the biopsy or the blood test. Our doctor told my mom it was probably eczema and prescribed steroid cream.
In 1997 I finally saw a dermatologist in Anchorage (there were no dermatologists in Kodiak). She said the same thing, it was eczema.
In 2005 (I was 25) I had my first child and just a few months after I had her I developed constant chronic pain and swelling in my left foot. A podiatrist told me I had a stress fracture (that wasn’t visible on x-ray). I was in and out of a boot cast for over a year. Eventually I finally ditched the boot cast.
Over the next few years I saw a total of 4 podiatrists and 1 orthopedic surgeon. I would complain to the doctors that “my bones ache.” You would’ve thought that would have thrown a red flag…
One podiatrist I saw multiple times kept telling me I wasn’t getting better because I wouldn’t stay off of my feet (My daughter, Kylie, was a little over a year old at the time and was just learning to crawl/walk. Sitting on the couch all day and not caring for her wasn’t an option.). This same podiatrist also told me my foot wasn’t healing because I refused to wear appropriate footwear. She didn’t seem to care that my foot was so swollen it wouldn’t fit into anything else but a flip flop. But what did I know? According to the podiatrist, I was just a young mom (who obviously didn’t know anything).
I saw a different podiatrist in the same office and told him that I didn’t think the other doctor I had been seeing was listening to me. He found the most painful place on my foot and squeezed it so hard that it made me scream. He smiled and said, “yep, she’s right… it’s a stress fracture and you’re not getting better because you’re not listening to her.”
I left the office and cried some more. It’s hard for me to look back on that day and not think he did it on purpose. That he purposefully inflicted physical harm just to try to prove a point. My foot hurt for days. I never ever went back to that doctors office.
I doubted myself. I started to wonder if they were right. Was it my fault my body wasn’t healing?
I took a break from doctors.
In 2007 I made a last ditch attempt to try another doctor. Fortunately, she was very kind to me and sent me to try physical therapy. It didn’t work (of course). I gave up searching for answers.
In 2008 I had my second child. When she was just a few months old she ended up getting some allergy testing done. Since we were talking about eczema with the doctor, I made mention of the rash on the back of my head. The doctor asked to see it, and then said, “Megan, I’m not a dermatologist, but this rash definitely doesn’t look like eczema to me, it looks like psoriasis.”
That’s it – that was the missing piece. I went online and discovered people with psoriasis could develop psoriatic arthritis and it commonly started out in the feet. I promptly made an appointment with my dermatologist and took her the MRI and x-rays of my foot. I told her I thought I had psoriasis and psoriatic arthritis. I will never forget the gaping look on her face. She took one look at my swollen foot and referred me to a rheumatologist.
In January of 2009 (I was 29) I finally saw a rheumatologist. I spent 15 minutes with him, and I had my diagnosis confirmed. He didn’t have to run any further testing, that was it. It was psoriasis. It was psoriatic arthritis.
In a general sense, I’d imagine most people get upset when they find out they have a disease. Not me. I felt relief, happiness, validation… Finally I knew I wasn’t crazy! We went out for lunch to celebrate. I know that might sound slightly twisted, but after all of the years, tears, awful pain, and emotional suffering, we finally knew what it was. We could finally start treating it.
At one point in time, I really wanted to write a nasty letter to those podiatrists who hurt me, belittled me, and made me feel terrible about myself. I still can’t believe they missed all of the signs of an autoimmune disease. Secretly, a very small part of me still wants to write that letter, but mostly, I want to look them in the eyes and tell them that I forgive them.
I can finally forgive them, or really work on completely forgiving them. Why it’s taken me so long to get to this place I don’t know, but it’s time to let it go. Time to rid the box of its pretty bow and packaging, and let the ugly go. I don’t need it in my life anymore, and hanging on to it isn’t doing anything for me either.
I still have that blasted boot cast somewhere. I’m going to find it, and when I do… I’m going to burn it.
This is linked to the EOA Link Up.