How St. Elizabeth of the Trinity’s Journey with Addison’s Disease Has Helped Me with My Own

 Because 1 in 100,000 people have Addison’s disease, it’s considered a rare condition. In the 1800s St. Elizabeth of the Trinity was one of those rare people. Since at least 2020, I’ve also been one of them.

Reading St. Elizabeth of the Trinity’s biography (He is My Heaven by Jennifer Moorcroft) was both beautiful and painfully real. I was diagnosed with having an adrenal insufficiency almost two years prior to reading the biography but wasn’t given the official Addison’s diagnosis until a few weeks beforehand. Reading about all St. Elizabeth endured in the last months of her life echoed what I experienced in the summer into autumn of 2020. 

The loss of weigh due to the inability to eat a majority of things. The increasingly debilitating fatigue. The eventual inability to do simple things such as walk or even sit without assistance. The pains. The lack of sleep. I knew it all too well. 

At my lowest point, in the summer of 2020, I was 98 lbs, down from 128-130 lbs at my healthiest. As someone who is approximately 5’7”, I was severely underweight and looked, as St. Elizabeth was also described, like as skeleton. My mother, who became my caregiver, had to help me get off the bed and walk roughly 10 feet to the restroom. I would get so winded and lightheaded during that short walk; my body felt so heavy and exhausted that I used to lay in bed for a long time after. St. Elizabeth also had limited physical activity and would be so exhausted from having her Carmelite habit on that they had to make her a special one of lighter fabric to help her physical fatigue. I ended up having to go to the emergency room a couple of times for dangerously low blood pressure, which is something that I’m sure St. Elizabeth also dealt with.

As for nourishment, my body slowly began rejecting all foods. I could only eat three things for months — boiled potatoes, corn tortillas, and only one type of organic chicken which a dear friend drove out to my apartment to drop off for me at least twice a week. Eventually that became only corn tortillas and the smallest bit of chicken.At the end of her life, St. Elizabeth could eat only little bits of chocolate, some dairy products, and, in her last days, only barley sugar. Addison’s affects digestion and, as an autoimmune disease, your body begins to think foods are attacking it and it starts rejecting them. That’s why we both lost so much weight. St. Elizabeth didn’t have to deal with a doctor accusing her of having an eating disorder but I did, which hurt because I very much wanted to eat and not get sick from food.

The big difference between St. Elizabeth’s Addison’s journey and mine is that I live in a time of modern medicine that could’ve saved St. Elizabeth’s life. We both seem to have had multiple Addisonian crises (that can be fatal)  only I survived mine.  I take oral hydrocortisone, a hormone replacement steroid, to make up for the cortisol that my body doesn’t produce on its own. It’s what keeps me and those with Addison’s alive. I will have to take it for life and my immune system will forever be weakened due to it, but it’ll allow me to live. During St. Elizabeth’s time, there was no such treatment. She suffered through the agony of pain and her body slowly shutting down. Addison’s was only “discovered” about 60 years before her lifetime so the best the doctors could do was try to keep her as comfortable or nourished as they could until her body could no longer endure it.

But, as much as reading what she suffered affected me, it was her beautiful faith that touched me the most.

It’s so easy to bemoan one’s sufferings and to wish we were better. We pray stubbornly for a miraculous cure, refusing to give up. There’s absolutely nothing wrong with that… but, oftentimes, it robs us the opportunity to offer up our sacrifices and to unite ourselves to Christ and his suffering on the Cross.

Having lived with this disease for two years officially and, in hindsight, several years before the diagnosis, I’ve had my moments of consolation in which I can feel the intense love of Christ; his presence ever present. But, more often than not — on my hardest days — I have absolutely no consolations. There are days when I’m physically, mentally, and emotionally exhausted. On these days, it’s harder to fulfill my duties as a Benedictine oblate (e.g. praying the Divine Office) but I do it for love of God. Not because I feel it — I usually don’t — but because I know my love of Him is there regardless. Here is where I can learn more about detachment from the world and myself from St. Elizabeth. 

She had such a beautiful abandonment of herself and total trust in God. She was so in love with Christ that she saw every pain, suffering, and discomfort as a bride sharing the same experience as her bridegroom. That is what I’m striving for, no matter what my vocation may be. I used to have that mentality but I lost it somewhere along the way. I hope that, with St. Elizabeth’s intercession, I can regain that ability to more closely unite my own sufferings to Christ’s.

I still pray for the miraculous healing of my adrenal insufficiency. I’ve accepted that this may be a lifelong disease and that God may be calling me to carry this cross for the rest of my life. I will do it as well as I can and know that whatever good comes from it, it’ll be with His help as I am too weak to do anything myself. Still, I will pray for a miracle if it’s His will. I will rely heavily on St. Elizabeth’s intercession and inspiration to embrace, endure, and even rejoice on this journey with Addison’s. 

I would like to thank my Oblate sister, sr. Elisabeth, for introducing me to this wonderful saint. When she told me I reminded her of St. Elizabeth, I didn’t understand why. Now with the Addison’s diagnosis, I understand… and I’m so grateful to God for giving me such a beautiful example of abandonment to His holy will, of trustful surrender, and of graceful suffering.

St. Elizabeth, happy feast day. Pray for me and all of us who have Addison’s disease.

Life and Priority Changes

 I know, I know. I didn’t blog at all last month. That was unintentional. 

Basically, life happened. I had another health flare up. Then I had my last wisdom tooth finally pulled (goodbye, last bit of wisdom I had). October is the month when I have most of my follow-up appointments as well. It was busy for me… and then we had an unexpected family situation that needed immediate attention and whatever free time I had was taken up trying to help out in any way I could. It turns out that despite my visual impairment, I was able to do a lot more than I thought to help out in the situation. 

As you can imagine, I felt overwhelmed. It got so bad that I had my first panic attack in a very long time and I cried from the crushing weight of it all. 

For the last two years I’ve been the one who has needed help — to make my food, to help me get anywhere that was new, etc. I was the invalid who needed help… until I became the girl who, yes, has a visual impairment but can also do so much for others. I still can’t cook for myself (though we were able to finally get an air fryer which will help). I still need help in new surroundings so that I don’t trip or accidentally hurt myself.  But even with those and other limitations, there’s so much I can do… and having such a major thing happen in the family reminded me of what I’m capable of doing in spite of the extra obstacles.

In the middle of all of that, I read saints books… two in particular. One was on St. Elizabeth of the Trinity. The biography was a recommendation from both my oblate sister, sr. Elisabeth, and my spiritual director. It took me a while to get to but I read it (slowly) around the time I got the news that my adrenal insufficiency was actually Addison’s and not secondary so the timing was perfect. I cried when I read what she went through at the end of her life because it was almost exactly what I went through two years ago… only I survived my adrenal crises and she didn’t. 

Then I read a biography of Blessed Carlo Acutis that was a birthday gift from two of my best friends, a married couple. I cried even more with this one. Even thinking about it is making me tear up. Reading about his time in the hospital in the days leading up to his death reminded me of my own experience in hospitals, especially how we both tried to make our nurses and doctors laugh even in the most serious situations. That’s something only those who were in the room knew… until now. I used humor to make tense situations less tense. It’s what I do. I wanted to keep everyone’s spirits up despite knowing how difficult my situation was pre-diagnoses. 

Both of these books — really, the lives of these extraordinary young saints — and what we went through as a family last month made me stop and reflect on a lot. Hence the radio silence.

Without getting too much into it, what I ultimately realized is that I need to both slow down and simplify my life even more AND to re-prioritize things.

I’ve started with basic things. I’m trying to be more careful about which books I read — which I think I need versus what the library says I need to read “right now because the queue is long and you only have three weeks before you have to wait months to get a chance to read it again.” I’ve returned so many books I was on the wait list for for weeks and months because they weren’t things I needed at the moment. 

I’ve also started to really think about finally pulling the plug on Twitter account because, as I’ve said many times before, I only had it for Epic Pew and freelance articles. Since I think I’m done as a freelance writer (this is “news” I’m breaking today) I don’t have a legitimate excuse to keep it around anymore. And, really, I think it’s been causing a lot of harm in ways I didn’t want to admit but am finally ready to face.

It’s always been a pride and egotism thing. Yes, it’s a great tool to get your work out to others. This is something that I’ve had many conversations with my spiritual director about. God seems to have given me a gift for words. Written word because I’m a disaster speaking. Lol. Would closing down my account and having a “God will get what I write to the person who needs to hear it” attitude be good? It can be both good and also sort of insulting since I’m potentially keeping that gift to myself. But, even then, it’s still a source of pride for me. Are my thoughts really that important? Do I have things to offer that other writers don’t? 

The answer to those questions is: I don’t know… and I don’t want to know. Are my thoughts really important? The egotistical side of me says, yes. My words are just as valid as others. I have things to offer others. Then the other side reminds me that, sure, I may have a unique POV that can help others but that there are so many people who are better writers than I am; who have more creativity than I do. I’m just… a simple, average gal who, sure, has a life experience most others don’t but one that knows when it’s time to admit that it’s time to step back and let go of that pride that comes with getting your works published.

So, I’m stepping back as a freelance writer. I’ll continue to write as a blogger. If the odd assignment comes up and I feel like it’s something that I can do without letting egoism worm its way in, I’ll do it. But, for now, I think God is asking me to learn to take care of myself and prepare myself for whatever may be coming. I know I can do the writing thing even with my visual impairment; now it’s time to learn to do vital life things that I won’t always have my family to help out with.

I’ll finish novel four but I don’t know if I have it in me to write a fifth. I’m not ruling it out but, at the moment, it’s not something I think I’m going to do anytime soon.

 God wants me to slow down. He wants me to go back to the basics. I’ve already done that with my spiritual life and it’s been wonderful. Now it’s time for me to do the same with other parts of my life. I keep thinking about how Blessed Carlo said he wasn’t afraid to die because he knew he didn’t waste a single moment of his life. I can’t say the same. I feel like I’ve wasted most of my life with unimportant things. But I want to change that. So, I’m going to reprioritize and step away from things that ultimately won’t matter.

All of this will make more sense to those who know all my family and I have been through in recent weeks and I hope to one day be able to share more details. For now, I ask you to please keep my family in your prayers as we make changes. And I ask for prayers for myself: that the Holy Spirit helps me figure out which sources of stress (I’m looking at you, Twitter) I can let go of and how to best handle stress I can’t control in a way that is healthy and won’t cause too many problems with my Addison’s disease.

Anyway, that’s it for now. I’ve not been well (day two of being stuck in bed) and I need to rest as much as I can.

As always, thanks for reading and God bless.

P.S. I’ve yet to make my decision on whether I’m going to delete my Twitter account, to make it private, or to keep it but no longer log in and block the website on my browsers. I’m taking it to prayer and I’ll keep y’all updated.