Before sharing one individual's experience of living with Graves' disease we wanted to share a little bit about what it is.
Background on Graves' Disease: The thyroid is an organ located in the neck just in front of the trachea. This butterfly looking organ is important for carrying out basically every bodily function. The brain releases a hormone called TSH which is essentially a key that will bind to the thyroid receptors and activate it to secrete the thyroid hormones. In Graves' disease the body makes antibodies specifically against the thyroid receptor. When the antibody binds to the receptor, it activates it. WHOOOPSIES looks like more than one key can open this lock! This activation is quite dangerous as it increases thyroid hormones and leads to increase in heart rate, metabolism, break down of muscle, increases bowel movements, changes mood, creates a heat intolerance and skin and hair changes just to name a few things.
"Hey there immune system, I think you forgot that the butterfly looking organ in the neck is apart of us, please stop making antibodies against it.
In 2016, I noticed a change in my energy and felt clothes were getting looser. At first I welcomed the weight loss but within a few months I had lost fifty pounds and became extremely fatigued and had barely any muscle strength. Frequently vomiting, numerous runs to the washroom, and feeling excessively hot in the cold weather was a daily experience. Eventually I received my diagnosis and I definitely felt this was fake news. How could I be sick.
These past few years have been like a never ending rollercoaster ride that you cant seem to get off of. There are brief moments were I feel great and "normal" but just around a corner is another uphill battle waiting. For example, two years ago when I started medical school I had a week where I felt great and was able to keep on top of my academics and family life. Sadly without a warning, I hit a horrible patch of low energy, low mood, anxiety, and feeling a burning sensation. During this time I was unable to study or be there for the people that matter to me the most. I felt like I was letting everyone down and that perhaps I am a burden on everyone and the health care system. I think I can narrow down my problem to the uncertainty this disease caused in my life. I felt as if I was no longer in control of my body.
Being in the health care system and ill is a unique experience. I remember learning about Grave's disease and noticed how everyone around me would say "oh thats a very common disease" or "not a big deal, this is seen in many women". These phrases created an isolating barrier for me to reach out for help.
So how did I finally learn to live with Graves' disease? Well first of all I needed a change in perspective. I needed to understand that I am not diseased, I am facing a change in my baseline health. To bring myself back to baseline I motivated myself to exercise to regain muscle and maintain my weight in a healthy manner. With exercising and finding opportunities to relax I found that I had more control over my body and was able to have more good days then not.
I stand in front of my uncertainties and illness related anxieties, ready to face and conquer them.
The battle is not yet over. Even though my lab values and lack of symptoms show I am in remission, I do have a creeping thought once in awhile that the illness will come back. But this time I will be prepared.
My advice for anyone experiencing something similar, be true to yourself and figure out what things you can control and focus on that."
-Anonymous.
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