I was a patient.
But it was only when I got a rare disease, that I learned to become an advocate, first for myself, and later, for others. For the past 10 years, I’ve lived with a rare disease: A whopper that is chronic and ongoing, even as the worst of it has passed.

Many years ago, I was diagnosed with Graves’ Disease. My symptoms were classic -racing thoughts, panic, anxiety, confusion, a heightened heart beat, weight loss, very, very dry skin, sensitive to heat and the sun, and an alarming change in my eyes and appearance. The first two endocrinologists I went to were awful. My thyroid was out of control. In desperation, I went across town to a university medical center, and found a new endocrinologist. She was smart, thoughtful, capable, and quick to start treatment. But on that first visit, she also took one look at me and sent me directly to a Cardiologist and an Oculoplastic surgeon.

The new endocrinologist got my Graves’ disease under control, but the bad news was broken to me by the Oculoplastic Surgeon. I had a separate disease that operated independently from the Graves’ disease of the thyroid. This one was caused by hungry Graves’ antibodies, which after causing havoc with my thyroid, took up residence in similar tissues around my eyes, causing inflammation and the classic symptom –eye bulge and eye dysfunction.

Prior to being diagnosed with Graves’ Disease, I’d had about 1.5 years of decreasing vision –my eyes were extremely light sensitive, I couldn’t see very well at night. I had dark circles under my eyes that would not go away. Even if I was well rested, people said I looked tired! My eyes were also extremely dry, both the eyes and the skin around them. I also had some weird vision things going on, like an imbalance and I started walking around with my head slightly tilted to accommodate my skewed vision. I remember at one point just thinking that I was aging poorly!

But now I knew this was a rare disease, which impacts about 50% of Graves’ Disease patients. It’s called Thyroid Eye Disease, or Graves’ Eye Disease. At the time that I got it, there was no comprehensive source of information. All that could be found were a few forums on social media, but consistent messaging at that time did not exist. It was rare, and rare diseases in general weren’t supported in a centralized matter.

At that point, the only thing that could be done was wait for the active phase to be over. Monoclonal antibody IV infusion drugs were still in clinical testing, and small molecule drugs were years away in development. The inflammation around my eyes would get worse before they could exact a solution, which was surgery. I had to go back once a month to check the progression, and each time it was worse. One eye shifted down, the other looked up slightly. This was caused by the damage to the muscles and tissues around my eyes.

While I could still drive, I knew that time was limited. I was developing double vision, but if I cocked my head to the left, it was okay. That and copious amounts of eye drops. Being a person whose habit it is to travel, I got in my car in March to drive to a work project in New Mexico. At the end of my stay in June, I could no longer drive. I was terrified of hitting someone. My husband had to come from California to drive me back. The active phase of the disease was nearing its peak. I could no longer read, so left my job. I had chronic headaches, and watching TV and movies was impossible. The double vision made balancing tricky, so even exercise was hard. I couldn’t go grocery shopping because I would quickly feel nauseated from the vision which at times was like looking thru a kaleidoscope.

I became housebound and depressed. I developed hypothyroid and gained weight. In an attempt to reduce the swelling, I went thru 10 days of orbital radiotherapy. That’s when they run a CT scan, and then make a custom mask that holds the patient’s head in place as they run them through a Varian Radiotherapy machine, shooting low doses of radiation to the tissues around the eyes. At this point, I was in so much pain, I had lost a large part of my vision, that any attempt to reduce inflammation was welcome. I thought of the machine as my space ship, and I have to admit -the room they had it in had great music, pink and purple lights. It was like going to a rock concert but having to be completely still.

Unfortunately, radiotherapy didn’t make that much of a difference. All I could do was wait until the inflammation abated enough to do an Orbital Decompression surgery, which would be followed by Strabismus surgery.

I waited. I mostly stayed at home, except when I took the dog for a walk. A kind neighbor would take me out to dinner, or sometimes we’d go to a movie (where I’d look at it sideways, or close my eyes). I’d wait for my husband to come home from work, who pretty much took over all of the shopping, and did all of the driving.

But there were some things I had to do alone. Like, getting to the doctor’s appointments, on days when I didn’t have a ride. I learned to take the train to the Metro Gold line to get to the Oculoplastic Surgeon, and an even longer trip on the Red Line to the Expo Line to the Big Blue Bus to get to Endocrinologist and the Cardiologist. I learned to count the number of stops, and listen for the announcements because I couldn’t read the maps. I lived in fear of missing my stop, and was careful to not get distracted. I memorized how many blocks it was to get where I needed to go. It took me hours to do this, though I enjoyed being independent.

Finally, I was given the go ahead for my surgery. Orbital Decompression is actually pretty painless, though it is a pretty ghastly surgery to think about. Because the tissues around the eyes are so inflamed, the swelling causes the muscles to push the eyes forward (in fact, I know 2 people with TED who have had their eyeball actually pop out). With Orbital Decompression, they carve away bone, making the eye sockets bigger so that the eyes can sink back to where they belong. I had this done, and I have to say, the recovery was easier than the time I had my daughter via Caesarian Section. While I was told that I “had the perfect facial architecture for this kind of surgery,” (whatever the heck that means), I still had double vision. But, the pressure on my skull was relieved.

I waited six months to fully heal, then had Strabismus surgery to straighten out (“re-align”) my eyes. I was left with some residual double vision, and one eye is still a little higher than the other. But wearing glasses greatly reduces that appearance. All of the double vision is gone now as a result of having a prism added to my eye glass prescription.

6 years post surgery, I’m much, much better now. Some days I forget that I still have Thyroid Eye Disease. But it’s still a continual fight. TED is a chronic condition, and I still live with extremely dry eyes, am prone to surges of inflammation and tired looking eyes. As a result of orbital radiotherapy, I now have a slow growing cataract. I check in with a Corneal Ophthalmologist, a Strabismus Surgeon, and an Oculoplastic Surgeon yearly. I’m very aware of how becoming housebound due to chronic illness can lead to depression, a plummeting sense of self esteem, and how the isolation can make you feel paranoid and unsure of how you fit in anymore.

One thing I’ve had to learn was releasing myself from blame. I have a chronic disease. I’ve taken steps to manage it. I have a better lifestyle now. Any regrets are ones that only serve to guilt tripping me about the past –was it the french fries, was it a childhood spent in the sun, was it a lack of iodine? Was I a bad, a lazy or a stressed person? I don’t know what exactly started my grapple with chronic disease, but guilt isn’t a cure. Besides, there are so many quacks out there that only want to separate me from my money with magic potions. I’ve learned to listen to really smart docs, using science evidence, who’ve treated thousands of cases like mine. I’ve learned to ask questions, as well.

In addition to moderating a forum on Facebook, I also had the pleasure of serving on the first ever, Thyroid Eye Disease Patient Advisory Panel. It was a national committee of others living with the disease. Together, we described what the disease looks and feels like, we told our stories and how we’d arrived at a diagnosis, and what our treatments were. Our info was pulled together by medical marketing teams, and is now shared widely via social marketing to help others become aware of the disease, as well as to serve as an info point for the new monoclonal antibody and small molecule treatments that exist now, or are coming up. These are all additional weapons that can be employed to not only fight the disease, but arrest it.

Last, year, three of us left the panel, as our terms were up. At the end of it, I told them we had aptly described the disease, we helped create the messaging of what it felt and looked like, and what the effect were, and where to get help. The new TED patients coming onboard the panel would help spread the word, and further define what having TED means in a time when new treatments are being added. In addition, there is much much more work to be done. The new treatments are only available in the U.S. There is a need to not only bring the cost of these new treatments down, but to get them approved in other countries, where patients are still suffering through the entire active phase.

We also need more persons of color suffering from TED to come forward and reach into their communities, especially making inroads to those who either do not speak English. We need to reach patients who might lack access to an endocrinologist, or don’t know how to work with their health plan to find one. We must also be aware of how the healthcare industry is changing access to services.

Today, the frontline of medicine isn’t necessarily a Family Physician. It’s a Nurse Practitioner, or a Physician’s Assistant, who may not know about Thyroid Eye Disease. What we all found is that even our primary care doctors and optometrists wrote off our chronic dry eyes to stress or allergies, and they did so for years. So we must get the word out to an ever-widening group of professionals to help them identify it, and refer them to an Oculoplastic Surgeon on a Neuro-ophthalmologist (the two specialists that are trained to diagnose and treat TED).

So much work has to be done in the area of Thyroid Eye Disease and other rare diseases, and the truth is… we need more patients to become advocates not only for themselves, and to help others. Because facing any chronic disease doesn’t have to be done alone.