5 Lessons at Five Years with Addison’s Disease

Five years ago this week, I was in an ambulance heading to the hospital. For almost a week, the doctors really couldn’t figure out what was wrong with me. It was terrifying, but that was also, finally, the light at the end of the tunnel. For almost six months, I had been slipping slowly into…something.

It was so slow and inexorable, it was almost invisible. Until the end. Near the end, I’d lost almost forty pounds, grew tired climbing the stairs, and freaked out about an electric tea pot. That was not invisible. God bless, Michelle and the girls for putting up with me. There are now a whole block of photos that we refer to as the sick times.

Things are so much better now and five years living with Addison’s has taught me a few lessons:


1. The body is a crazy, complex machine

There is no owner’s manual or warranty. You might do everything right. Get rest, take your meds, be active (but not too active), eat right, stay hydrated and you still could end up having some side effects. Why? I have no idea. Much of the time managing Addison’s is more art than science. You are not in control. At best you have one hand on the wheel. This is not easy to accept, but you need to roll with it.


2. Rest days are part of a healthy workout plan

You should not feel guilty for taking a rest day. I realize this might sound crazy to people that dread exercise. But workout burnout is real and doubly dangerous for someone with a chronic disease like Addisons where stress, dehydration and fatigue can really take a toll. Letting your body recover is a key part of exercise and key part of healthy lifestyle with Addisons.


3. Mental health is just as tough as physical health

Turns out being suddenly diagnosed with a chronic disease can mess with your mental state a bit. The best defense? Just having a good support system around to help reassure you and support you (or take your mind off of it). You just can’t let it overwhelm you. You need to strenuously argue against yourself. Biologically, we survived this long by being wired for pessimism. If you prepare for the worst, you can usually survive. Optimism doesn’t actually come naturally, but you can learn it. Bad events occur and might have a large impact in your life, but they are not permanent and they are not unchangeable. Keep repeating that.

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4. You are not alone

In one respect, this disease has pulled me out of my introvert’s shell. It might be a rare disease but I’m certainly not the only one in the world suffering from it. There is a whole community of support out there and a whole group of people in the same boat searching for the same answers. The internet is often a cesspool of division but this is a case where it can connect and make you feel a lot less special. In a good way.


5. Sometimes there are no immediate answers

Five years later this is still sometimes the harder part to deal with. Why did this happen? The type of Addison’s that I have gets lumped in with other autoimmune diseases and they all share the same basic truth: no one knows why your body decided to attack itself. That’s the best answer you’re going to get.


Five years later, I might not have all the answers but the good days far outnumber the bad days and that tea pot no longer threatens my marriage.