Who’s The Enemy?

Enemy- A person who is actively opposed or hostile to someone or something. A thing that harms or weakens something else.

It’s been 12 years since I was diagnosed with Panhypopituitarism, Hypothyroid, Secondary Adrenal Insufficiency, and Traumatic Optic Nerve Neuropathy. Over the last 6 years I’ve been battling Steroid Myopathy and over the last 2 years, it’s progressed to the point of me needing to use a cane for mobility. I’ve had 8 different Endocrinologist’s in a 11 year span. Now technically I have my 9th one but, that was due to moving to Texas. It was a series of relationships that seemed more one sided to me. They were the experts in my medical conditions and based off of the information in my file, tests, results, etc they would put together their chemistry experiments of different medications and use them on me. They consistently would never take my questions, opinions, concerns, or experience in living with these conditions on a daily basis into account. It was all about them being in control of my treatment. They were too busy playing “god” to realize what they were doing. To be fair, in hindsight I do wish I knew more about my disease at that time to be able to have some ammunition with me when I went to these appointments. I could’ve challenged their theories and facts. But no, I was naive and took what they said as the gospel and continued to play lab rat for them. All the chemistry experiments were always the same just different versions. Bottom line, none of them worked. They were exhausting, they wasted my time, my money, and my energy that I didn’t have to spare. To me, each of these physicians were the enemy and they were winning this battle. I reached so many lows that there wasn’t any more low to go. I was below ground and in denial that I wasn’t depressed. Among the many routine questions asked by my physicians were the following. Do you experience depression? Are you a threat to yourself or someone else? My answer always was no, I’m pissed off! As far as the second question, I was biting my tongue because I was so frustrated and angry that I wanted to say yes, because I wanted to lash out at them and scream! I remember one time I left one of my physician’s office so upset and crying that I went into the women’s bathroom and made sure it was empty first and just started kicking the bathroom stall doors. In reality, I was depressed but just didn’t want to admit it to myself.

One day in 2013, a light bulb came on in my head and I had the thought that there must be other people dealing with this same issue with physicians not treating their medical conditions property. I can’t be the only one! There has to be some sort of support group for people who have my disease. So in comes Facebook to the rescue! The one thing I had determined to stay away from because I thought it was the enemy. Well, it can be both your enemy and friend and a love hate relationship. In this situation, it became my friend because I discovered a whole other world of support groups of people who are battling the same diseases I have. You cannot imagine my amazement when I realized that I wasn’t alone in this! I’m not crazy (well….sometimes) or imagining things (well…sometimes), but not in this case of my health and the physical and mental toll it was taking on me. Some physicians have a way of making you feel like you don’t know what you’re talking about and because you’re not the one with the medical degrees you’re clueless about your own health. I started to feel empowered by what I was learning and being able to share my experiences frustrations, and questions with others and them sharing the same thing with me. I could take what I was learning from the support groups to my physicians and actually have a discussion about it. The tides were beginning to change and I was beginning to realize that I needed to be my own advocate.

The tides took time to change and they are still changing. This process requires determination, patience, education, vulnerability, honesty, and lots of hard work. It’s not for the faint of heart. You can feel like you took a step forward and then literally get knocked back on your ass like you never even moved. Even in the midst of this you see you’ve made some progress and it though it may be small, you can’t and must not give up. I slowly began to see that maybe the physicians weren’t the only enemy. Maybe I was also the enemy. I wasn’t being proactive in my health. I was taking their word for everything. I was allowing others to control how I was feeling and feeling guilty for feeling the way I was. I was depressed and down I couldn’t see how to get up. I was in the dark and couldn’t see until that day when the light came on. The light of support and help.

The relationship with my current Endocrinologist for the past year has been interesting to say the least. I don’t see her as the enemy. I see her as someone who is willing to hear my opinions, frustrations, concerns, and questions. She’s honest and doesn’t mince words which I respect because I’m the same way. She’s opening my eyes to certain aspects of this disease that I honestly hadn’t thought of or knew about. She seems to have a genuine concern for my health which in turn gives me more confidence to try other options in my treatment. No other physician I’ve had ever took the time explore other options. Well, the tides are changing quickly as we speak because I’m taking on an experiment with my steroid medication. I’ve been on steroids for 12 years. Without steroids, I would die so I’m steroid dependent and that’s a fact. Now, while steroids are my lifesaver, they are also my enemy because of the extensive list of side effects. One of the main side effects I experience is the Steroid Myopathy which causes muscle weakness in your limbs. The higher the dosage, the worse the effects. Hence, me using the cane for mobility. My arms also experience weakness to where at times it’s difficult to lift my arms above my head or hold objects in my hands for too long. My Endocrinologist is adamant that I lower my daily steroid dosage to a level I’ve never been at before much less entertained. I’ve survived at a certain dosage level for years and never imagined being on anything less because I didn’t think I could function. She stated that if I don’t try this, my steroid myopathy will only get worse along with my mobility and I could end up bedridden. Well, that’s not an option.

Knowing what I know now, I no longer go with the preconceived notion that any physician I see is the enemy. I have more of an open mind to give them the opportunity to share with me their professional opinion, diagnosis and treatment options before judging them. I can no longer allow myself to be my own worst enemy because that will hinder any progress in my life both professionally, physically and mentally. I’ve found that by taking the time to research, ask questions, look for answers, seeking out resources, and most importantly, asking for help, will make my life a little easier to manage. We need to be friends not enemies.