Living with Graves` Disease
Once I could walk from one side of town to the other without issue. I worked on my own car, I carried my children with ease. These days a simple task such as folding laundry can wear me down. Half way through the day I can feel exhausted and the only thing I’ve done is shower and cook a meal. I spend every day living with Graves` Disease. I don’t believe that most people realize that. I feel when they see me in my wheelchair or with my walker they judge me harshly. I notice the sideways glances and in some ways, I have grown used to them, but it is always in the back of my mind. I want to help them understand what it is like to live with the invisible Graves` Disease.
I was first diagnosed with Graves` Disease when I was 31 years old. For years I had been misdiagnosed with having bi-polar disorder and was told that it was the reason for my mood swings. At the time there was no Affordable Care Act, and I had no health insurance. My husband’s job did not provide dependent insurance and I was working in fast food which provided health insurance, but it was very expensive and not very good. Because of these factors I wasn’t seeing a doctor on a regular basis and went undiagnosed for a very long time. I was miserable and always complaining about various ailments, so much so that my husband regularly told me that he thought I was a hypochondriac. To hear my long list of complaints, I’m sure most people would have agreed with him. Even I questioned whether I was being over dramatic.
We were still living in our first little apartment. It was a one bedroom on the second floor of a small complex. I noticed that over time climbing the single flight of stairs to our apartment became more difficult instead of easier, this was very frustrating as I couldn’t understand why. I also couldn’t understand why I a 31-year-old female was losing hair? This made no sense to me. Hair loss only happened to men, or so I thought. I also noticed that any time I received a small wound such as a scratch it would take an unusually long time to heal. My hands constantly shook and were unsteady, something I originally attributed to drinking too much caffeine. I had trouble sleeping and I was either burning up hot or freezing cold. There was no middle ground. I had developed a goiter which is a large lump on the neck. I had lost a lot of weight, that was the one thing I was happy about. I had spent most of my life being chubby and somewhat over weight, so to finally be thin had me thrilled. However, the longest running symptom I dealt with were the emotional problems. The mood swings I had made me believe there was something horribly wrong with me. Sometimes at night I would lay awake for hours trying to figure out what was wrong with me. Why was I so depressed that I couldn’t get out of bed? This had been going on for so long, that I was desperate to get any kind of help. I no longer wanted to feel worthless. Put plainly, I was sick and tired of being sick and tired.
After seeing an advertisement on television for a study on bi-polar disorder, I decided to try to sign up for it in the hopes that I would temporarily receive relief from at least the emotional problems I was dealing with. In the end, I wasn’t accepted into the study because it was during the medical workup that it was discovered that I had an autoimmune disease called Graves`. Autoimmunity is where one’s immune system wrongfully decides that something in the body is foreign and responds to it like it would a virus. Because of this reaction the immune system begins to release antibodies to attack it. In my case my thyroid was attacked. I didn’t realize how serious this diagnosis was. After all, my mother had been on thyroid medication for hypothyroidism for years and she was fine.
I made an appointment with the local clinic on the advice of the doctor from the study. Though I had no idea how we were going to pay for it, I just knew that I needed to be seen. At the appointment, blood work was done to confirm my diagnoses. I was very calm, no one had told me how dire my situation was. Based on everything I had been told so far by the doctor I had spoken with at the study clinic, I would only need some medicine and then things would be normal again. The doctor at the regular clinic did not go out of his way to explain this situation to me any better. He neglected to inform me that I would need to have bloodwork done regularly to check my thyroid levels, so the medication could be adjusted. He simply wrote me a prescription for a three-month supply and then sent me on my way.
During the next three months I began to research everything I could about this disease. It was also during that time, I also noticed I was gaining weight. I gained weight so rapidly that I was off balance and began to have pain in my hips and back. Then I came to understand why. Graves` Disease causes a person to lose muscle. So, while before I had been happy to think I was losing weight, I did not realize I was losing muscle, and not fat. This muscle deterioration was compounded by the fact that I was now, due to the medication, rapidly gaining weight. I was devastated; not only was I rapidly putting on weight, but I was also quickly on my way to immobility.
It has been my experience that when most people hear about thyroid problems, they normally do not associate it with anything dangerous or life threatening. What they do not realize is that Graves` disease is deadly if not treated. In my case it gave me a permanent heart arrhythmia, which is scary because I will randomly feel flutters in my chest. I also can’t do things like watch horror movies or go to haunted houses because the shock could cause cardiac arrest. It has also given me severely dry skin, I lose hair, and I have cognitive problems sometimes, or what we in the Graves` community call brain fog. I also suffer from mood swings depending on how my thyroid levels are. Some days I am bright and chipper and feel I can take on the world. Other days I can barely drag myself from my bed. Because of the muscle deterioration throughout my body, it has made walking or standing for any period time very difficult. This has made going out of the house a frustrating experience for me. When I do go out I need to use either a wheelchair or a walker. Which one I use depends on the type of day I’m having. Some days I’m so low on energy I can’t gather the strength I need to walk and using the wheelchair is just easier. Other days I’m able to use the walker and I prefer to use it because I feel like I’m accomplishing something. I had always been an active person of independent nature. Going from being a person who enjoyed things such as being in the outdoors hiking and camping to being someone who required help just to get to the car was like a kick in the gut.
A few years after my diagnoses my husband secured a job which did provide dependent insurance. I was then able to finally seek a primary care doctor with whom I could discuss treatment options. At first, I was very relieved to finally be able to start treatment. But then I came to the startling realization that all Graves` Disease sufferers eventually have. Not all doctors are the same and not all of them consider every avenue of treatment. I had to run the gauntlet of doctors shouting various treatments, but most wanted me to do the same thing, they wanted me to remove my thyroid. However, what I had discovered in my research was that thyroid removal is not a cure. In fact, it only deals with one symptom of Graves` Disease, and after thyroid removal an individual is then left with taking medication the rest of their life. The thyroid produces a hormone that is essential and without it you could die. Once it is gone there must be a replacement for that hormone that the body no longer produces on its own. Because of that, anyone without a thyroid will need medication for the rest of their life. In my opinion, the problem with this approach when you have Graves` disease is that it would be like cutting off your nose because you have cold. You will no longer have a runny nose or the sniffles, but you would still have a cold.
I became angry and frustrated with these doctors and myself. I felt like my body had betrayed me and no one understood what I was going through. The constant pain, tiredness, and fight to get anyone to listen to me caused me to slip into a deep depression. I spent the next year not really doing anything. I spent the days, when I could pull myself out of bed, using the internet as a distraction and the nights were an endless fight for sleep that seemed to avoid me most of the time.
Thankfully I have a wonderfully supportive husband. He was there to make appointments for me when I just couldn’t. He went to every appointment with me and asked the questions I could not remember because of my brain fog. He made sure I took my medications, when somedays I just did not remember it. When my muscle deterioration reached the point of me not being able to stand for very long, he began cooking our meals, and helping me meal prep on the weekends so I would have something to eat while he was at work. Without my husband I have no idea where I would be.
Eventually I found a doctor who was willing to listen to me. There was no pressure from her to remove my thyroid. She recommended dietary and lifestyle changes, such as the removal of added sugar, and processed foods, and testing for allergens to certain foods such as items from the nightshade family. She also prescribed me a regiment of vitamins and herbal supplements to help to deal with my symptoms. Eventually the treatments we worked on together made things easier. My hair still falls out but not in clumps like it once did; I just clean my brush more often than most people. Thankfully, the brain fog can be managed through the dietary changes. I’ve found that certain foods will trigger it and know what to avoid. I am currently working with a physical therapist to try and strengthen my muscles. It is my hope that eventually I will be able to walk better and stand for longer periods of time, though it can be frustrating and hard to get going some days. I have found that diet changes have also helped with my mental state. I still have bad days sometimes, but most of the time I’m able to overcome them.
It’s been ten years since I was first diagnosed, and it’s been quite a journey for me and my family. During that time, I’ve dealt with many things and many people. I have had quite a few people, including extended family members, question whether things were as bad as I said they were. For most people it is because this disease can be so invisible. Many of the symptoms are ones that are not outwardly shown. It is very frustrating and insulting to have someone say to me that I am being dramatic when I know that I am not. Because of this I’m thankful for my immediate family members who have endured this with me and who have been there for me to lean on when I needed it.
Eventually I grew tired of just existing. I wanted more from my life. I also wanted to contribute more to my family financially. The jobs I had traditionally done were now unavailable to me due to my lack of mobility. I decided I was going to do something about it and made the decision to finally earn my high school diploma. I discovered that I was able to do so online. It would cost more than taking the G.E.D. test, but I would have an actual diploma. I would have finally finished something important in my life. I signed up and realized that I had so few high school credits I would need to earn the full amount. It took me two years but eventually I finally earned that diploma. I was so proud of what I had done. Many years ago, I had ignorantly walked away from school, so to go back and earn my diploma through hard work made me not only very happy with myself but feel very accomplished as well. But then I realized I wasn’t done; I wanted more. After researching my options, I decided to enroll in community college and earn an associate degree in the medical administrative program. I was very nervous. What if I could not handle the course work? What if I was not smart enough? I decided not to let that hold me back. I had already faced so much in my life that I decided this was not going to be an impossible hurdle, but instead it would be just a hill I had to climb and that I would eventually overcome it.
Once I could walk from one side of town to the other without issue. I worked on my own car, I carried my children with ease. These days I may not be able to do those things, but I can do so many other things because I have the willpower and the strength to move forward. I am not defined by my disease; it is just part of me. So many people suffer from diseases we can’t see or illness that is invisible. You never can be sure just what they are experiencing. Before you cast that sideways glance, try to remember that just maybe there is more to the story than you can see.