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 ¼ inch deep and a ½ 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.
I am so sorry that you had to go through so much pain for so long without understanding why. Good for you for forgiving them. That is as much of the healing process as anything.
Good Luck to you
Thanks, Vicki. 🙂
Danielle @ Fresh4Five says
Megan, I am so sorry you had to go through all of that to get the help, and answers you needed. Ego is a terrible thing, and that Dr totally violated you, and that is not something that is easy to get over. I am so glad you are in a better place now, and able to move on though, releasing that will probably help you even more. (((Hugs)))
Thanks, Danielle. 🙂
Laureen @FoxKitchen says
I love that Maya Angelou quote. Your joy at getting a diagnosis is understandable. It allowed you to finally move forward. Hope you find that boot cast and start a bonfire with it. Although metaphorically, I think you burned it the day you walked out of the rheumatologist’s office.
I admire your strength. Thanks for sharing.
Once I get the boot cast out of the crawlspace I’ll have to take a picture of it going up in flames. 🙂
Thanks for your sweet comments.
Beth Trizza says
I feel like you should contact those doctors and let them know about your journey and their ignorance. They need to be better informed, so as to diagnose the next person that comes to them with the symptoms you had. No one should have to endure what you went through! There is too much advancement in the world of medicine for doctors to miss these kinds of diagnoses. It is a good thing to let go, what’s done is done. Thank you for sharing your story and for sharing all your great knowledge and recipes with us.
I agree with informing the doctors of their misdiagnosis… the thought that they might do this to others is saddening (especially as they seem to have felt that they were correct in their diagnosis and not open to other possibilities of what might have been going on)… they need to be educated so they can better treat the people going to them looking for answers.
Thank for sharing your strength and courage and your persistence to find the answers to your health, it gives others that same courage not to give up and to keep investigating what might be wrong and how to fix it.
I only just found your site a couple of days ago, and I look forward to working my way through the archives, thank you for sharing your path with us.
Amy Chadwick, ND says
Megan, I honor you, your strength, your bravery, your honesty and your commitment to heal through your own stories. It is such a blessing to be a part of your journey.
Kat Schneible says
Gentle hugs. I know exactly how you feel, I went 16 1/2 yrs before finally getting a correct diagnosis. Most of those years the doctors just ignored me and insinuated I was imagining all the pain. They also made me much worse by telling me to do the exact things that made my condition worse. They usually blamed everything on my doing too much, being a young mom, working a full time job, etc. They just didn’t listen or care. I still have doctors ignore what I tell them, because they make up “their” minds immediately. I don’t go back to those doctors. Let it go and always know that you are the expert on your body.
Oh Megan. Your journey has been the exact same as mine! I have totally taken charge of my conditions and have overcome so much. I just wish I was at the same place as you for forgiveness though as I think that could be my final breakthrough. I personally have lost all trust in doctors and have a void in my life in where to turn on how to handle the rough days where I ache so bad because I may have fallen off track with diet and supplements or having a stressful time. They just don’t understand how diet, exercise, supplements and mental health can help so many conditions as opposed to just handing out another prescription. I have been medication free for two years now. I have a great Nutritionist who just listens when I go see him to keep me focused and motivated and anytime I do breakdown it’s because of how I was treated and disregarded in this journey. Just like you I had physical signs all over – rashes, inflammation, swollen lymph nodes, feet and hands doubled in size but it was in my head because I looked young, fit and “healthy”. I think I will keep your letter and remember forgiveness (and try my best to do it). So, again, thanks for your letter and hopefully in the near future I can move past my previous experiences and forgive. Peace and good luck to you.
Sweet Megan, thank you for sharing your journey of health and healing with us. It amazes me how many doctors won’t truly listen to their patients and won’t look for answers outside of their scope of specific knowledge. I am so happy you continued to look for the answers you needed and found the correct diagnosis. Your passion for healing inspires all of us.
wonderful post and wonderful attitude. Some docs have a lot to answer for! Cheers
Selena Bluntzer says
You could just change condition names and we have the same story! I have a rare condition that has been present since birth, but was not properly diagnosed until I was 18. I was also subject to being told “it’s all in your head”, and being given treatments that did not help or made things worse. I have not lost all faith in doctors, but it is through sheer will of not wanting to lose that faith, not for a lack of them trying to make me lose it. I have encountered a few brilliant doctors, like the one who finally diagnosed me, and they help keep that faith alive, as well. I usually feel like I have forgiven them, but then when I think back, I feel that pit in my chest and realize I might not have let every last bit go, so maybe I need to work on that. Thank you for your post and for the reminder to let it ALL go.
I do agree with the others that it’s good to educate the doctors that got it wrong, though. I was a young child when I was misdiagnosed, so I don’t know who to go back to, but I am always glad to educate each new doctor I meet.
I also completely understand the joy of diagnosis. I was not sad AT ALL, even back when I was misdiagnosed with a much worse condition, because I thought I had an answer. All we want is the truth, so we can deal with it. It’s the not knowing that is hardest. I was recently genetically confirmed with my diagnosis and it was THE greatest feeling of vindication. I wanted to fax a copy to every doctor that ever told me breathe in a paper bag! That’s when I realized I hadn’t really let it all go, though. 😉 Again, thank you for sharing. 🙂
“Unforgiveness is like taking poison and hoping the other person dies”
Suzanne Perazzini says
I am with the group of commenters who have said to write to the doctors. They need educating but it might also be a form of closure on what they did to you. Post the letters and don’t look back.
Katie @ Produce on Parade says
Hi Megan! Your story sounds exactly like my husbands. We also live in Alaska. He was “diagnosed” with juvenile Rheumatoid Arthritis in high school. A diagnosis by default it’s called because the Rheumatologists at the Cleveland Clinic couldn’t think what else it could possibly be. He’s gone to physical therapy, massage therapy, and has been on several intense RA medications. He’s been to a podiatrist, an acupuncturist and just recently has been seeing Rheumatologist Dr. Botson in Anchorage. Have you seen him? We really like him.
There was a point in time that we thought maybe it was some other sort of autoimmune disease and went looking for answers. We’ve tried gluten free, dairy free, sugar free, etc. and have finally settled on being vegan while avoiding nightshades. Gluten doesn’t seem to be a problem for him, but dairy creates a huge inflammatory response for him. He’s on three different medications right now 🙁 I know what you mean by just wanting to know what the disease is. We were right there with you and we would have gone out to celebrate as well! Dr. Botson has come to the conclusion that it’s probably just juvenile RA that has progressed into adulthood.
I admire your strength and I’m so happy to have found your blog! I started a food blog as well. It’s nice to release some of the sorrow and have a laugh. We should start an Alaska autoimmune disease support group! 😉
I’m so, so excited to connect with you! But very sorry to hear your husband is/has experienced similiar issues. 🙁 I have seen Dr. Botson, and didn’t care for him, but I’m very glad you both like him. It’s so important to have a Dr. you trust and like!
Dairy creates a huge reaction for me too, so I can definitely sympathize there.
You are sweet! I’m happy too – and excited you aren’t far from me! I’m going to send you an email. 🙂
Meghan- it’s been over a year since your first post. How are you now?
I am hanging in there. 🙂 I still have my moments of pain, the spondylitis comes and goes, but I maintaining. Thanks for asking!
I went through a similar experience when my little girl (4 years old at the time) was diagnosed with Type 1 diabetes. Our pediatrician thought I was crazy. “Look at her, does she look like a child with diabetes”? She talked me out of testing her. Three miserable months later my daughter almost died on the soccer field. Yep, Type 1 diabetes. Every doctor in the pediatricians office apologized to us. Its so important to be our own advocates in health care. No one knows us or our children better than ourselves! I think you should write that letter to the podiatrist. Maybe they will think twice before they dismiss the next patient that has your symptoms.
Jacqui Cherry says
Sweet Megan, I so understand you on many levels.
I was treated unforgivingly by the medical community, yet I forgive. (Forgiveness is more for the offended than the offender, and how could I not forgive, when I know how Christ has forgiven me?)
It took decades before I finally diagnosed myself, they certainly weren’t helping.
It’s been trial and error to find what diet is best, and I’m still trying…
I’m an RN. I’m constantly telling people, “Listen to your patients!” Some listen, some don’t. But every one that does, is a victory. 🙂
I did have the privilege of returning to my GI dr, to tell him of my self-diagnosis. As soon as he saw me, he asked “what happened???” And you know what happened? He apologized for “missing it”. I taught him for about thirty minutes, and he listened. And he thanked me for it. And he refused to charge me. But you and I know that this will not happen with everyone. This man is special…kind, humble, a Christian who lives it, and a joy to know. Heaven knows he tried! He just didn’t know. But he says that now he knows how to help many more of his patients. THAT is victory!
I saw rheumotologists, endocrinologists, podiatrists, GI specialists, and more. I’ve been poked, prodded, scoped repeatedly, and had multiple surgeries, some of which I didn’t need.
The sad truth is that we live in an imperfect world, with many doctors who are rushed and overworked. Therefore, they have little time to read and learn about new research. If they’re going to pick something to read, most likely, they’ll choose cardiology over gluten issues because of ignorance…they don’t realize how it robs life from us. But it’s not intentional. They don’t get up everyday and purposely hurt their patients. Although I well know what it’s like to have multiple physicians take out their frustration of not knowing on me…to use the “all in your head” card. I’ve shed many tears. I’ve lost jobs…multiple…because I couldn’t stand up, or couldn’t stop vomiting, long enough to take care of my patients. Though I sure tried…vomiting before report, in between pt’s rooms, and after giving report. It’s a difficult journey, but my Father is helping me through it. And for that, I am thankful.
Thank you for sharing your journey.