woman lying on couch watching tv

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.

woman lying on couch watching tv with dog

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 feel 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 to.

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.

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 you could’ve picked. Who aren’t sick all the time. Who you don’t have to carry into the doctor’s 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. 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 three and a half 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 sweatpants 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.

hospital bracelet on wrist

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 three and a half 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 three minutes before they pulled you away again…. and it would be another three 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.

This blog was originally published on Snapshots, Steroids, and Sales.

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I was 17 years old when I was diagnosed (correctly) with a chronic illness. My mother and I were sitting on my hospital bed after four days of medical testing with shaking hands and racing hearts waiting for a diagnosis. We had gone through four long years of endless doctor’s appointments, two misdiagnoses and far too many dead ends until this moment.

We had no idea what we were up against. Then the doctor came through the door and uttered the words, “Addison’s disease.” As he began explaining this unfamiliar illness, my head was buzzing with both thoughts of relief and thoughts of fear. Relief because the drought of not knowing was finally over — we had a diagnosis and a plan. Fear because he was throwing around phrases like “steroid treatment” and “life-threatening.”

The doctor quickly introduced the strict regimen of medications I would have to undergo and explained how to stress dose and to administer my emergency injection. Things were happening quickly, and we didn’t get to stop to ask many questions. When my mom finally found a pause in the conversation, she asked, “How long will she do this? When will she get better?” Without missing a beat, the doctor uttered, “This is for life, ma’am. She’ll need to be on these medications from here on out.” I heard my mom gasp. This wasn’t what we were expecting, but I didn’t flinch.

It was at that very moment when I accepted the weight of having a chronic illness in full. I said to myself, “This is it. This is forever.” There was no questioning and no denial. 

I truly think this was also the moment when the baton of advocacy was passed from my mom to me. My mom had been my advocate my entire life. She flawlessly managed my other childhood conditions and the chaos of trying to get my sick and withering body diagnosed. She helped me understand and cope every step of the way. Her advocacy is what truly brought so close together over the years. We’ve become more best friends than mother and daughter. It was time.

As my mom began to hurriedly scribble down all what the doctor was saying, I began to ask more of the questions, assert my own concerns and take my own stance. This was the start of my new life with my own body. It may be broken, but I knew it was mine.

If I wasn’t at the maturity level of an adult already, surely I was at that moment. At this point, I knew I would no longer relate to many of my friends. We were different. What we defined as important was different, and what we fought for was different. They were in charge of their grades and a used car, and I was in charge of a broken body. I was empowered. I’m the only one who can do anything about it. It is the most liberating feeling I have ever experienced.

Embrace the diagnosis. This is your life, and having a chronic illness puts no limitation on your ability to shake things up and be a fighter. You’ll hurt, you’ll be weak, but you owe it to yourself to take charge and fight.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

daughter holding injection I do not get many opportunities to one-up my disease. By far the most dangerous and deadly component of APECED (APS Type 1) is Addison’s disease, or adrenal insufficiency. Any major stressor, such as an accident, broken bone, high fever or stomach virus could require an emergency injection of Solu Cortef. This does not come in an auto-injector, nor is it carried on ambulances or administered by emergency personnel. The primary mission of Adrenal Insufficiency United is to change this, but until then, it is up to me and my family to make sure I have this when I need it.

I have required my injection on multiple occasions since my diagnosis, one of which was immediately followed by a trip to the emergency room where I arrived comatose. High doses of hydrocortisone are vital to keep my organs from shutting down.

When I was first diagnosed, I asked for B12 shots so I could practice giving myself intramuscular injections and also allow my husband to do the same. At the time, my daughter was in kindergarten, so we simply taught her the importance of communicating my condition to others and pointing out the location of my emergency injection kit.

Now that my daughter has grown into a confident, 11-year-old young lady, I decided it was time for her to learn to give me an injection. The more people around me who are capable of acting in an emergency, the better my chances. What I did not think about, however, was how this simple, 10-minute lesson would empower her, build her confidence and give her a feeling of supremacy over my disease. In her entire memory, Addison’s disease has been an enemy; it has been her adversary, one that has robbed her of a “normal” mother. I thought I was doing something for myself, but I was actually giving my daughter an amazing gift – the knowledge and ability to defeat this evil monster she has known for so long.

Many people remarked at how comfortable she seemed. Yes, she was a bit too giddy at jabbing her mother with a big needle! But just for the record, she has no interest (at the moment) in going into the medical field.

Her interests are in STEM; maybe she has been overexposed to doctors and hospitals. However, I am convinced if she manages to combine the two, one day she might make an excellent Bond villain, and I can be her chronically cranky sidekick.

Editor’s note: This is based on an individual’s experience and should not be taken as medical advice.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

I live with primary adrenal insufficiency. For the most part, my disease is completely invisible. You might see me always carrying a bottle of water with me, and I do wear a cortisol pump, but other than those two things, you would have no idea the gland responsible for the stress response in my body is completely dead.

I also work full time in a highly stressful and highly technical field. For the most part, my employer has been understanding and accommodating with respect to my disease. But these are 10 things I wish they better understood.

1. Managing my health is like working another highly demanding full-time job.

During the peak of my disease flare in 2013, I was bouncing back and forth between 14 different specialists with each one running their own set of tests. Each one had their own opinion of what was wrong with me, and sometimes those opinions would conflict. I have to find a way to balance all of that on top of my actual day job. Thankfully, things have slowed down, and I only have to manage four doctors regularly. But I still need to view managing my health as a top priority, so I’m able to successfully complete my actual job.

2. Please don’t make jokes about my special diet.

Calling attention to the food I’m required to eat only further isolates me from the group. Stating things such as “Oh, I want to cut in line!” or “I wish I got my own special box” might seem like innocent small talk, but it’s really not. Do you really want my special food and all the things associated with it? Do you realize the pain I’ll experience if I stray from my diet? Do you not know I’m reminded of the fact that I’m different every single day? I don’t need you to further point it out to me. I don’t draw attention to my food, and I kindly request that you don’t, either.

3. Don’t make jokes about work ethic or “working hard.”

I had a manager who once joked about his work ethic. He said they should keep loading him up with more and more work until they found him collapsed and convulsing in his office. I kindly approached him and told him not to make jokes like that. What seemed like a highly unrealistic scenario for him is actually a very legitimate fear of mine. Push me too far with this disease and you will find me collapsed and convulsing.

4. I don’t know when or how my disease will flare up.

You ask me how long a specific task will take but then grow frustrated with me when I’m unable to give an answer. Please understand I don’t know when or how my disease will flare up. One day, I might be able to be super productive and knock out everything on my to-do list in record time. The next day, I might be unable to coherently state my name, and you will find me hiding in my cubicle.

I do everything in my power to manage my disease in such a way that those bad days are minimized, but forcing me to arbitrarily pick a task completion date only adds unnecessary stress to my life.

5. I’m working as fast as I can.

And yes, that speed varies. Just because I was able to accomplish 10 things yesterday might not mean I’m able to make the same amount of progress today. I understand this unpredictability is frustrating, but honestly, welcome to the life of someone chronically diseased. Know that I’m giving my best, and I apologize if my best is too slow for the project. If you try to pressure me into working faster, that only increases my stress load, which only slows me down further. Please trust me and trust my pace.

6. Don’t request I give 100 percent to a project.

Please realize my 100 percent costs a lot more than your 100 percent because of my disease. A late-night conference call on a Wednesday night for me might spiral out of control into an ER run on Saturday morning. For another team member, it might just make them tired. I’m willing to work to get the job done, but please do be considerate of the high personal cost associated with your requests. Is the price associated with the request truly worth it?

7. Please realize I struggle in meetings.

I promise you I’m not trying to be combative or disrespectful. I feel physically ill when I’m trapped in a room with more than 10 people for a significant amount of time. If my input is actually needed, I’ll do my best to manage my disease in such a way so that I can handle the meeting. But so often, we get side-tracked on off-topic discussions. I’m then forced to spend a significant amount of time in my cubicle attempting to recover in silence and not allow my disease to flare worse.

8. Respect my time.

It takes a lot of work and effort to manage this invisible disease so I can successfully function in the working environment. Scheduling appointments with me allows me to prepare so I’m able to effectively communicate with you. I absolutely dread large meetings, but appointments on my calendar with one or two critical people are much easier for me to handle.

9. Understand how I best communicate.

Some days it’s harder to grasp certain concepts, so I have to write everything down and share my reports with you. It’s so much easier for me on those days if you just read what I’ve sent instead of asking me in person. I’m not trying to be rude, but if you ask me what I did, it’s highly likely I won’t remember. I can read what I wrote down. And you can read what I wrote down. This is my safety net, and how I’m actually able to still accomplish so much while working with a chronic disease.

10. I know. I don’t look sick.

In your day-to-day interactions with me, it’s easy to forget I’m actually living with a chronic and potentially life-threatening disease. I purposefully live my life in such a way so you just see the smiling, laughing and slightly sarcastic engineer. I don’t want my entire identity to be wrapped up in my disease. However, I also recognize a large portion of my identity is heavily influenced by my disease. Over the years, I have learned how to best work with it so I can successfully work with you as well.

I understand you might forget I’m chronically ill, but please realize that I never do. If you can remember these 10 things, I’m able to be a better employee and you are able to be a better employer.

Follow this journey on Clearly Alive.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

I never disclosed to my college professors that I live with primary adrenal insufficiency (PAI). Even when it caused me to fail a couple of finals or I had to miss class to have scary medical tests run, I kept it hidden from them. I did not want to single myself out. I didn’t want to appear weak.

But when I started working, I quickly learned I must tell my managers about my PAI. Within the first couple weeks on my new team, I informed my manager. I mentioned how I sometimes suffer from extreme fatigue that can come on suddenly without warning. I told him if I suddenly become illogical, irrational, combative or extremely emotional, those actions aren’t me. They’re warning signs of low cortisol.

I also told him I try to be extremely mindful of how I’m feeling. If I start to feel myself go downhill, I take actions to place myself in the safest environment as quickly as possible. My manager said he trusted me to know my limits and he would respect them. All I need to do is speak up.

In November, we hit a stressful period at work. Around 4 p.m. on a Friday, I knew I needed to go home. I had already worked late two nights that week and began to fade. I grew increasingly frustrated and struggled to understand simple instructions. I hadn’t revealed my PAI to my other coworkers. They didn’t comprehend the importance of my statement that I needed to leave.

My manager walked into the lab. After one look at my face, he asked if I needed to go home. I said yes. By this time I was shaking from low cortisol brought on by extreme exhaustion. As we left the lab together, he said, “It looks like you have already pushed yourself too far, Amber.”

One of the most difficult things about living with this disease is I never know my breaking point until it is too late. I’ll feel somewhat OK and then suddenly, I’ll feel awful. And I won’t even realize I feel awful at first. I just appear extremely combative and irrational.

By this point, I was on the verge of tears. In desperation, I threw my hands up in the air and stated, “I just don’t want to appear weak!” I hurriedly rushed away because I couldn’t stop the tears from flowing. My manager did not immediately chase after me. Instead, he waited a few seconds, then stopped by my desk, asking me to step into his office on my way out. When I entered his office, the first thing he did was apologize. He wanted to make sure he didn’t imply I was weak. I responded with gratitude for his understanding.

I explained to him how fear of appearing weak is a personal demon of mine. I’ve never been healthy. I’ve never been normal. I’ve survived living in this world by comparing myself to those around me and trying to not fall behind. I’m working on growing more confident in who I am as just Amber without comparing myself to others.

He paused before he spoke. And when he spoke, it was with words of encouragement. He stated that every engineering problem I feel I must personally complete doesn’t rest solely on my shoulders. That is part of working on a team. We help each other out and share the load. He pointed out my contribution to the team in terms of completing tasks is completely replaceable. But he didn’t stop there.

“What is irreplaceable, Amber, is you. Do not push yourself to the point of collapse. That helps no one. You need to take care of your health first. You need to do what is best for you. A healthy Amber is a better team contributor. A healthy Amber is better for the entire team.”

I left his office incredibly encouraged, humbled and in tears.

Over the past two years, I’ve actively been working on this. I previously believed it was selfish to admit I didn’t have the strength to complete a task. I would try to muscle through things to the detriment of my own health. But saying I don’t feel well and need to take a break, eat a snack or walk outside of the lab is not a sign of weakness. Setting proper boundaries actually takes an enormous amount of strength.

This may seem harsh, but from a task standpoint, you are completely replaceable at your job. But while you can be replaced in your job, you can’t be replaced as a human. We must protect our health and our spoons. It’s much better to speak up and say, “I need a break” rather than push ourselves to the point of collapse.

It benefits everyone. And it helps us remain Clearly Alive.

Follow this journey on Clearly Alive.

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“I strongly believe that everyone has his own mountain to climb,” Luca Galimberti says in the video below.

Galimberti, who has Adrenoleukodystrophy (ALD) and Addison’s disease, literally climbed a mountain in August 2013 — on a cross-country sledge for paraplegic people, using only his arm strength and the help of fellow climbers. He reached a 12,000-foot- high peak of Monte Rosa, the highest mountain in Switzerland. Director Mauro Mancini filmed the climb in the six-minute documentary below.

The feat is, of course, impressive — but the best part of the clip is Galimberti’s close relationship with his son, who never stopped believing in his dad. Make sure you watch through the end, when Galimberti radios his kid to tell him that he overcame his mountain.

Real People. Real Stories.

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