The Mighty Logo

6 Things I Wish I Had Known About Living With Adrenal Insufficiency

The most helpful emails in health
Browse our free newsletters

Perhaps you have come across this article because you or someone you love has just been diagnosed with adrenal insufficiency (AI). I am writing this article because I have been in the front lines of this fight alongside someone I loved. Those of us who cross paths with this situation will tell you the naked truth: AI is no laughing matter. In fact, it can be downright debilitating.

Don’t be defeated; all is not lost. When life bears down upon you in such an unfair way, you must push back with even greater determination. Sometimes, however, it can be difficult to even see the way forward. I have been a part of the AI fight for almost 10 years, and there are some things I wish I would have known sooner.

1. Take your diagnosis seriously.

Again, AI is no laughing matter. You or the one who was diagnosed have a fight for quality of life on your hands. AI can worsen if left undiagnosed, unchecked, or untreated and can even become life-threatening. The sooner you act upon it, the better you will be able to mitigate the effects of AI. My then-girlfriend began experiencing symptoms of AI almost 10 years ago. The tiredness, the diet changes, the sleep paralysis were all chocked up to stress, depression, etc. It took five years to get a proper diagnosis identifying what was actually wrong. By this time, AI had done so much damage that her adrenals were in total failure and beyond recovery. Do your best to take action ASAP.

2. Don’t despair, support is out there.

There are others out there who are dealing with the same circumstances you may be currently facing. These people can certainly help remind you that you are not alone in this fight. However, just like in any community, remember to associate with people who will lift you up. Surround yourself with those who are positive. Learn from those who have found ways to make the best of their situation. In addition to this, there are advocacy organizations, such as the Adrenal Alternatives Foundation which can help inform you in the fight against AI.

3. You’re going to have good days and bad days.

Go ahead and come to terms with this one. Depend on the severity of your diagnosis, you are not going to feel like a ray of sunshine every day. Don’t beat yourself up. Don’t tell yourself that you need to need to be doing everything your healthy peers do. If you are having a bad AI day, then do not push yourself! Remember, you do not have the advantage of health that your peers have. Don’t let others pressure you into doing more than you can handle that day. You may have to tell them “no.” You may have to insist. There are many people who won’t understand your situation. Do not allow them to get under your skin or make you feel bad.

4. If your loved one has AI, support them as best you can.

Following up on the last point, people living with AI are not going to be a 100% very often. If your loved one has AI, please be understanding and patient with them. Many times they will feel depressed or defeated. I can tell you from experience that they need your special attention more than ever at these times. It can be difficult on you, the caretaker, sometimes. However, don’t think that your loved one is purposefully being a “downer.” Don’t get discouraged. There is a response to this situation that works a lot of the time!

5. Cortisol, cortisol, cortisol.

This is the juicy part. Depending on your diagnosis, there is a good chance that you need to take cortisol in order to stay alive. If you or your loved one with AI is really dragging, or seems to not be acting like themselves (for example my then-girlfriend would get overly emotional) there is a very good chance that they need to increase their cortisol intake. I’m no doctor, but I can tell you from years of experience that when the migraines start coming on, the despair starts setting in, or the will to carry on just isn’t there, an up-dose in cortisol is the tried-and-true answer (in my experience) much of the time. It isn’t some sort of panacea, but it almost always has helped. Sometimes you may have to remind your loved one to up their dosage. Often, the effects of AI can be so overwhelming that they can forget to up-dose themselves.

6. Look into all of the methods of AI treatment.

Let me be frank. In our experience, endocrinologists often don’t know a whole lot about how to handle AI. In fact, finding a good “endo” can be a huge challenge. In our situation, we have tried everything from pills to shots when it comes to delivering the cortisol/steroids you may need. If you ask my personal opinion, the cortisol pump method has been the best solution by far for us. Obtaining a cortisol pump allowed her quality of life to return. If we had known about this option from the start, we would have gone after it immediately instead of trying the other methods.

Dealing with this disease can be a costly matter. However, the most important thing is to not give up. It is possible to get insurance to cover some things. You can definitely get to supplies you need. Talk to people, because there are those out there looking to help you with your situation. Sometimes you might get bad news for your efforts, but keep on punching, because eventually you will break through, even if it takes a while.

Even though it has been a challenge to fight adrenal insufficiency, it doesn’t make you any less of a person.

I would have chosen my partner over and over again, regardless of her health status.

So please, don’t give up.

This story originally appeared on Adrenal Alternatives

Originally published: July 30, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home