Thursday, April 7, 2016

AI Awareness: When Someone You Love Is Diagnosed With Addison's Disease

1 in 100,000 people will be diagnosed with Addison's Disease, or 10 in 1 million people. You could easily go your entire life and never hear of Addison's Disease, let alone meet someone with it. When your best friend/sister/son is diagnosed with this rare disease, it can be difficult to know how to help.

Your loved one has likely been in and out of doctors offices and hospitals for years (I've read it takes an average of 5 to 10 years to get diagnosed) and has gone through changes in their physical appearance and attitude. They may have exhibited unusual behavior, depression, or fits of anger prior to diagnosis. If you have stuck by your loved one through these difficult years, congratulations!

The sad truth is, most people won't or simply can't. They aren't able to wrap their brains around having an illness that is so difficult to diagnose and so rare that most doctors don't even consider it. It messes with their idea of reality: that doctors have all the answers and if you just do what they say, you will be OK. For some, it's easier to believe that your loved one is lying, self-sabotaging, or in some other way, preventing their ability to get well.

This line of thinking, in my opinion, partially contributes to the fact that most people are not diagnosed until they reach rock bottom. When the majority of your friends and family don't believe you, it's easy to start doubting yourself.

That's why you, dear reader, are so important. You've chosen to believe your loved one when they describe the unrelenting symptoms they face day after day. You've decided that even though someone may be a doctor, they are still a stranger, and you've chosen to listen to your loved one over the opinion of a stranger (no matter how well educated they may be). You've held their hair while they've puked and their hand while they cry. You are awesome.

And now you finally know what's wrong! This is a huge milestone and one, I think, that should be celebrated. Once your loved one is diagnosed and put on steroids, they are generally able to start eating again. As their body replaces nutrients and minerals and hormones it has long missed, you may feel that your loved one starts to seem like their old self.

The hard to swallow truth is your loved one will never go back to being their old self. The diagnosis of a chronic condition means their lives will be forever changed. Each day will be different; even after diagnosis, your loved one will still have good days and bad days. They may have to cancel plans at the last minute or not call you when they said they would or take forever to text you back. You may have to be a better friend to them than they can be to you. 

You should know that your loved one probably feels badly about this. While our bodies are limited by our disease, we can still think of and dream of all we wish we could be. And that generally includes being a more active and involved friend or family member.

You should remember not to take things personally. When your loved one is distant for an extended period of time, it's not you, it's them. Sometimes we need time to work out a new symptom, handle an additional illness, or simply don't have the energy to get out of bed. It usually has nothing to do with you.

You should know that your continued attempts to include and invite mean the world to your loved one; that it probably hurts them more than you when they have to skip your latest gathering or event. Rare, chronic illness can feel incredibly isolating. A simple invitation, even if not followed through on, can be a lifeline when one feels so alone.

You should also know that your loved one is incredibly strong and they will share that strength with you. If you ever have a medical problem, you will not find a better advocate in the world than someone who has already gone down the path of chronic, undiagnosed disease. Your loved one will impress you when they speak to the doctor in terms you thought people only learned in medical school. Your loved one will protect you from making the same mistakes they did. Your loved one won't mind a 2am phone call. Chances are, they are up anyway! And if not, they are eager to repay your kindness and will gladly answer.

Having a loved one with Addison's Disease isn't for the faint of heart. It would make your life a whole lot easier to just walk away.

Be the one who stays.

We are worth it.


an Addison alien

who would like to thank Christine M. and Kari B. for always standing by me, driving me to the ER countless times, and always answering my call for help, ever since my symptoms started more than 10 years ago. I love you both endlessly. You are bad-ass bitches. 

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