Can you really see me? We have all seen the look. You tell someone you are hypopituitary and they get this look of confusion on their face. “But you look fine”. Most people have never heard of it before. Honestly I had never heard of it until being diagnosed. It is an invisible illness that we feel on the inside. The chains, ropes and cables that hold us back from who we used to be. Hypopituitary means our Pituitary Gland is no longer functional so we don’t create all or most of the pituitary hormones that people need in their daily lives.
For me this is still all very new. Diagnosed almost a year ago with a golf ball tumor inside my head that was crushing my pituitary gland. Surgery to remove the tumor in October. It is June now as I am writing this and it has been a battle with the medical system to get all of testing required to get to where I am today. You see, we have to artificially try to replace all of the hormones we used to have now. It is a forever balancing act with our hormones and will be for the rest of my life.
So what exactly do people not see in us from this illness? What is it? Maybe you have heard of Addison’s disease, or Adrenal Fatigue. How about Hypothyroidism or Hypogonadism? Possibly Growth Hormone Deficiency. Have you heard of Diabetes Insipidus? Maybe you know about Beta Endorphins, Melanocytes, or Oxytocin deficiencies (which even our medical system does not fully understand yet). You see, all of these illnesses are each caused by one hormone being deficient in your body.
For some people living with just one of these conditions is challenging enough. For those of us that are hypopituitary, we live with all or most of them every day. Every hour of every day we analyze how we feel and have to think which hormone is causing the issue today that needs to be medically adjusted to help us feel better. The symptom list is massive and can change depending on which hormone is causing the symptom that day or what life challenges we face. In people who do not have this illness, your body makes these adjustments hundreds of times per day automatically. The tree of symptoms above that I created gives you a rough idea what we may go through. Sometimes these symptoms go away only to come back again stronger than before. Its a forever balancing act.
We hear it all the time. “At least it’s not cancer”. “There is always someone worse off”. Yes you are right but in our minds that belittles the daily struggle we have. I have heard it from others like myself. If it was cancer at least we could make the choice to fight it. We may win or we may lose but we can fight. We have to deal with what we cannot fight. We wonder every day if the tumor some of us had removed is going to return or regrow. For many of us the tumor grew so gradual over years we did not see the changes it made to our health, our personality, our mental state. Now we look back and wonder who we used to be and when did we really change? When was I actually the normal me? How will I ever know if I am normal again? What is it even like to feel normal?
For many of us with this illness we become obsessed. I see it in the forums and Facebook groups every day. We obsess about everything we feel, every new symptom, and wonder if it is related or how to fix it. The obsession is part of the illness and many don’t even know they are distancing themselves from the family. The want and need to feel better is powerful. Feeling exhausted and tired of fighting every day wears on a person. The problem is the obsession we have drives us away from our family, friends, new relationships and our lives. We hide from the world in hopes we get back to some reality of normal. Many live with fear, anger, anxiety and depression. Because our illness is invisible, many of our friends and family will distance themselves because they don’t understand. In reality this is the time that we need these people the most. We need them to understand and we really need their help.
To use me as an example, I wake up every morning and take my thyroid meds first thing on an empty stomach. I go for a shower and after I apply my Testosterone. I will be switching to injections soon so I will also have to take another medication to ensure the testosterone is not converted to estrogen. An hour after waking up I take my large dose of adrenal system medication with food. I need this one to survive daily. Without it I would fall into adrenal crisis, a coma, and then possible death without emergency treatment. This medication has an eight hour life in my body so I know when I start to get low. This medication I take three times a day. At night before bed I inject for growth hormone. This is the standard day for me not including vitamins that have to be carefully sorted around meds to not interfere. I use alarms on my phone to remind me of each. Luckily for me I no longer have Diabetes Insipidus so that’s one less medication off my list. In the last six months I cannot even count how many blood tests and medication dosage or brand changes I have done. There will be eye testing and MRI’s consistently for a while to watch for growth.
Through the forums I have met many people that have had to change careers because they can longer function at the same capacity they used to. There are those that cannot be around groups or out in society because of anxiety. I have met those being treated for depression. Patients that this illness has caused separation and divorce. People who are lost in the medical system fighting for a proper diagnosis or just for basic medications because they have not found the right doctor. Those that are fighting their insurance companies because they will not cover the cost of the medications we need so they go without. And I have seen the face of death and suicidal thoughts from some because they cannot take it anymore.
I chose to advocate and spend time listening and helping those going through this illness as best I can.
These are faces of the people with Hypopituitarism. Can you really see us now?