Today, when somebody asks me why I have this or that symptom, I can finally give them an answer. I can put a name to the strange collection of pains and illnesses that have been a constant companion, for better or worse, as long as I can remember. I can say that I have Mixed Connective Tissue Disease, an autoimmune condition.
Of course, having a rare disease like this usually means that the fancy name only confuses people more. Their understanding isn’t the point, though. The point is that it took me fifteen years to learn that name. Fifteen years of doctor’s visits, physical therapy, false diagnoses, self-doubt, and frustrating conversations with medical practitioners who clearly preferred to make a snap judgement about my condition based on a small subset of my symptoms rather than trying to help improve my quality of life.
If any of this sounds familiar, if you can relate to this experience at all, I want you to know something. It’s very important, and it takes away the knack that chronic illness has for making you feel powerless; listen closely. You are not alone. You are not the only one who has struggled with chronic illness. You are not the only one with a disease that seems to raise more questions than answers. You may have days where you cannot get out of bed because your disease is vying for control, but you are never alone.
That’s why I want to tell you my story. Up until very recently in my own journey with invisible illness did I realize that there was hope to be had, and people who could empathize with my situation. I hope you enjoy reading about the path my illness carved out for me, and that at the very least you feel a little bit less alone in terms of your own search for wellness.
Let’s Begin At The Beginning
When I was a child, if I did something I shouldn’t have, my father would punish me by having me stand in the corner for 15 minutes or so(though it felt like hours at the time). As punishments go this is fairly innocuous, but it stayed with me as I grew because I remember it as the first time my chronic pain interrupted my life. Ever since I could walk, I was plagued with chronic knee and ankle pain. When I had to stand for long periods of time (in a corner, for instance) my knees would very quickly begin screaming in pain.
This was also the first time I dealt with having to convince people that yes, there actually was a problem. I weighed a little more than most kids my age, and I remember my pediatrician telling my mom that I had “tight” tendons in my legs, and that must be what was causing the pain–along with my weight, of course. Stretching, running, and playing would help, he said.
If I stretched and ran and played like the other children in the neighborhood, frequently the next day would find me limping in pain. No noticeable injuries or sprains, just lots and lots of pain. Teachers and family members suggested I was a hypochondriac or was lazy and trying to get out of chores–obviously it simply wasn’t possible for a 7-year-old to really be in pain every day.
Fast forward a few years, and now I’m in high school. I still have leg pain constantly. I’m at a loss for why still. At 12, I was diagnosed with Arthritis and given a prescription for Naproxen to help with the pain. The medicine did nothing, and I hated taking pills, so they ended up going in the bin after a few months. When I was 14, a different doctor said it definitely wasn’t Arthritis, but he had no alternative diagnosis to offer.
The pain in my knees was constant. I would have “episodes” of ankle pain so severe I was unable to put weight on the foot at all. My hip joints began hurting on occasion as well. I had been to the ER once at this point for trouble breathing, as well–that turned out to be my first panic attack. By 15 I had severe generalized anxiety that wouldn’t be diagnosed until age 19. I had been dealing with suicidal ideation, anxiety, and constant pain for years now.
I saw my 4th orthopedic specialist at 16, who informed me that I had “severe, chronic tendonitis”–in every tendon in my legs. This didn’t make sense when I thought about it for too long, but I jumped at the chance to put a name to my problem and enrolled in physical therapy sessions three times a week.
These helped some, but as you can imagine given the ridiculousness of the idea that I have had chronic tendonitis since birth, didn’t fully alleviate my symptoms. What it did do, however, was give me my very first tools for managing my symptoms. I learned to pay attention to the changes in severity of frequency of my symptoms, and I learned that stretching regularly does a lot to help my pain level (hello, yoga).
The Light At The End Of The Tunnel
I went to another few specialists over the next several years and again had my previous diagnosis debunked, with no new ideas to replace it. My senior year of high school, I dealt with an eating disorder in an attempt to control my mysteriously expanding waistline. I was restricting myself to about 500 calories a day and managed to gain 80 pounds in six months. I couldn’t stay awake, despite drinking about 40 ounces of black coffee every day.
A straight-A student my entire life, I began failing my classes and had to drop out of my extracurricular activities because I kept falling asleep during meetings. My anxiety continued to get worse, along with my pain and depression.
I saw a very smart GP who diagnosed me with Hashimoto’s disease, and also immediately sent me to a cardiologist because at 17 my resting blood pressure was 178/95. That led to all kinds of scans on my heart, assuming that with blood pressure that high I must have some kind of heart condition. Nope, perfectly fine. Diagnosed with idiopathic hypertension (AKA, another doctor who didn’t know why I was sick) and given yet another medication.
Fast forward to age 23. I am taking 5 medications every day, and have collected diagnoses of Hashimoto’s Thyroiditis, idiopathic hypertension, generalized anxiety disorder, major depression, and still a big question mark around my pain. I have new symptoms, too. I’ll go through periods where any little thing I eat leaves me bloated such that I can feel my skin stretching from my stomach’s distention. I get fairly severe hives, from fingertip to elbow and toe to ankle, that has no discernible cause and is not helped by allergic medicines.
The hives led me to an allergist. A very, very smart allergist with an interest in immunology. In addition to learning I’m allergic to soy, hops, and just about every plant and animal on this earth, he ran many blood tests. We went from thoughts of lupus to sjogren’s syndrome, and finally landed on mixed connective tissue disease. Upon discussing with him the symptoms that MCTD patients present, it felt as though he was describing my life. He sent me to a rheumatologist to confirm the diagnosis, who ended up telling me that I also (apparently) have fibromyalgia.
What’s In A Name
The great thing about a diagnosis that seemed to actually encompass all of my issues was that I have Google on my side. I was able to start searching for resources and ways to get better. Unfortunately, modern medicine pushes for immunosuppressants and all kinds of harsh medicines. I was so, so tired of taking pills every morning and needed a different answer
I did countless hours of research and began keeping records of my symptoms to try and find triggers. I learned about the Autoimmune Protocol, a dietary change centered around holistically calming your immune system to give you a solid chance at achieving remission.
I am now down to just two medications per day and hoping to eliminate those last two within the next year. I learned to listen to my body, and hear what my symptoms are trying to tell me. I made a career change–working from home helps with my stress levels and makes all my symptoms less severe. I began eating foods that nourished my body and calmed my overactive immune response, and I swear I could hear it say ‘thank you’ as my issues with bloating, weight gain and chronic fatigue faded to very manageable levels.
There is no magic button you can press to make this all better, no pill you can take that will truly heal your body. The only weapon you have is hope. Persevere through the dozens of doctor’s visits, and never let your hope die. You aren’t the only one who’s going through this, and there are lots of people ready and willing to lend a kind word or helping hand as you try to find your own best self while managing a chronic illness.
For greater insight into interacting with those suffering from the issues mentioned in the article or if you would like to chat with others affected, try the app, WeAreMore.