Just Because I Look Well Doesn't Mean I Am Well

I have a chronic illness. In fact I have several chronic health conditions, the main one being adrenal insufficiency. Having adrenal insufficiency is not an easy condition to live with and often the illness can be a nightmare. My adrenal glands don’t produce the lifesaving hormone cortisol and as a result I can get very unwell very quickly. There is no way to monitor my cortisol levels without a blood test which would take too long in an emergency and so each day I have to guess when I need more medication based on how I feel.

When you are unwell and low in cortisol, you get many symptoms including brain fog which makes it difficult to work out exactly what is wrong. I need my husband to help me work things out at times and know how much extra medication to take. Becoming too low in cortisol is life-threatening and can lead to adrenal crisis and death. Therefore I’m always monitoring my symptoms and this chronic condition is always something I need to monitor carefully.

 

Some of my symptoms when I get low in cortisol range from headaches to dizziness, aching muscles, low blood pressure and eventually the runs and vomiting. At this point I most likely will need an emergency injection and a visit to the emergency room to prevent things from getting worse.

In the early days, in particular during the first two years of my illness, I had over 22 stays in the hospital. My private endocrine doctor says I was knocking on death’s door. It’s true. I was. I was falling apart, stuck in bed, unable to stand without collapsing and needing to use a wheelchair.

After years of saving I found a good doctor who is treating me. He has helped me to better manage my condition and I’ve only had one visit to the hospital in a year. It’s a huge achievement and I’m really pleased. I can now pick up when I am unwell a lot sooner and act faster to prevent the need to visit the ER.

The one thing I wish people would understand which I realize they often don’t is that I am still unwell. Just because I am not in the hospital on death’s doorstep does not mean my illness has gone away. I still have to monitor my health from hour to hour, increase medication regularly and rest up whenever I start to feel ill.

I feel unwell daily. I struggle with exhaustion and often feel physically exhausted. I stay home a lot. I can’t lead what others consider a “normal” life. I have a new normal which involves a lot of pacing and resting in order to do the things I do choose to do.

One thing I struggle with is when people tell me, “You look so well.” I know people genuinely are trying to be nice, and maybe they are really trying to say, “It’s good to see you’re out” or “It’s great you’re not in the hospital.” The reality is whether I am sick or not, I look the same. My chronic illness, unless I am in adrenal crisis, is mostly invisible.

You can’t see low blood pressure. You can’t see feelings of nausea or sickness and just because I have gone out, it does not mean I am feeling good. I wish people could understand how frustrating it can be when they tell me, “You look so well.” I am not well. I will never be well. I have a chronic illness and sometimes people with chronic illness don’t look sick because illness cannot always be seen.

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