Support for Those Living with Adrenal Insufficiency

To The Husband who didn’t choose this….

To The Husband who didn’t choose this….

I know this isn’t how you thought it would be. I know this isn’t how you envisioned our life together. When you married me, When we started all of this… I know you didn’t picture this life for us, I know this isn’t what you wanted.
 I know this because I didn’t picture this life for us either. I wish it was different, but I can’t even imagine what you wished. I can’t help but think you didn’t know what you were getting into when you married me, because neither one of us saw it coming. I can’t help but think you might have drawn the short end of the stick in our marriage. I can’t help but think I’m not the wife you pictured, the wife you deserve.
But here we are, living like we are years beyond our age. I’m sure you didn’t picture taking care of me for weeks that turned into years or staying in with me every night I’m too sick to leave even the couch. I’m sure you didn’t picture your wife nearly bedridden for days on end. I’m sure you didn’t picture your life like this.
With just one word, our lives were changed forever. It wasn’t just my life that changed when I heard the words “Addison’s Disease”. Your life was changed, too.
My heart breaks for the burden I have put on you — a burden that is enormous for anyone. With those words, That diagnosis.. you became more than just a husband. You became my caretaker.
You don’t see it, but my heart aches every time I can’t meet your needs like a “normal” wife would. Because, you see, I’m not a “normal” wife, as I’m sure you’ve figured out by now. I know it’s not what you’re used too.
When I forget to prepare your lunch, I’m embarrassed that I can’t help you when you do so much for me. When we have to cancel a date or a family event, I’m afraid they will think we don’t care, or they’ll think I’m trying to keep you from them. When you eat cereal for dinner, I’m ashamed I can’t cook for you like other wives would, like a wife should.
I’m humiliated every day you come home and I’m still in my pajamas or haven’t even moved from the bed. Believe me, I don’t want you seeing me like this, but I don’t know what else to do. I am so weak. I have no energy. And I hurt so badly.

 

Every day I want you to see me the way you used to and be proud to call me your wife. But most days I struggle to even brush my hair, or my teeth. Some days it puts me in so much pain I sit on the bathroom floor and cry. Not only in pain, but in hurt because I feel like I keep letting you down. My heart breaks each time I step on the scale and the number rises. There are so many other women out there who I know you could’ve picked. Who aren’t sick all the time. Who you don’t have to carry into the doctors office, literally.. Or you don’t have to rush home because you get that text that says I’m on the floor and can’t get myself up. So many other women who could do everything that this disease keeps me from doing, and everything that it keeps me screwing up…
Please know that when I lash out in anger, I’m not really angry with you. I’m not upset because the milk went bad or you forgot to take out the trash. Believe me, it’s not really those things. I’m upset that I can’t be better for you. I’m upset that I’ve become a burden in every way — emotionally, physically, financially. And I’m upset that my body is failing me at only 31. A lot of it is the medication. Please be patient with me. I’m trying. I’m adjusting. This is all new for me, too.
There will be days I don’t want to talk or seem distant. In those times, I just want you to hold me. Reach out your hand and grab mine. Do something so I know you’re still there. Because it is your arms that are my safe place. It is only your hand that keeps my focus when everything else is fuzzy and going out of place. It is the hand that held me through 3 1/2 weeks of hell, and It is the hand that I need every single time I go back….
There will be times I leave the room quickly and I’m sure you’re wondering why. This means the pain has reached a level I can no longer tolerate. I will probably be curled up on the bathroom floor with tears streaming down my face. When this happens, come find me. I need you most in these moments.
There will be times you don’t know what to do. I know you feel helpless. You’ve told me as much in the past. I don’t need you to have a solution. I just need you to be there for me. Give me a hug. Let me cry. Tell me everything will be OK even when neither of us really believes it. Just hold me. Play with my hair, and just be my rock as you always are.
There will be times I’m angry about my diagnosis. Sometimes even the sight of my medication upsets me You see, it controls me. I need it to survive yet it feels like a poison every time I take it.  Be patient with me as I fight this battle.
There will be times I feel guilty. I feel guilty every Sunday when you go to church alone as I lay curled up in bed. I feel guilty when you go to a family event without me. I feel guilty because I know I am a financial burden. But most of all, I feel guilty that I changed your life forever. Please tell me it’s not my fault I’m sick. Don’t ever stop telling me, don’t let me forget that. Because I will.
There will be times I feel unattractive. Every day I wake up to sunken eyes and a lifeless pallor. Remind me that you think I’m beautiful. Even when I’m wearing sweat pants with messy hair and a face sans makeup, remind me why you fell in love with me. I need to hear it.
There will be times you think I don’t notice all you do for me. I know this sickness consumes me and I’m sorry. Remember that I love you and appreciate you more than you could ever know.

I know you didn’t choose this, but you’re choosing it now. Even though when we started this…. you didn’t know I would become sick.. But you know now. You didn’t know that you would sleep in a hospital chair for 3 1/2 weeks, or that you would spend over 11 hours clutching a 2000’s model flip phone.. waiting for a call that said I was ok… and when you got that call that you would only see me for 3 minutes before they pulled you away again…. and it would be another 3 before you could be by my side again.
Yet you stayed with me. You could have left, You had every chance.. every reason…. but you chose to stay with me. For that, I am eternally grateful. This journey is going to be hard; I’m not going to lie. But it will be so much easier knowing that you’re by my side.

We have a problem.

250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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