When You Are at the End of Your Life at 42



Lupus will try your body and your spirit. Exhaustion and pain can tempt you to bitterness and self-pity. I’ve been fighting this battle to “live with Lupus” since I was diagnosed five years ago. In fact, I’ve actually been fighting this battle for most of my life not realizing the enemy I was fighting.

I thought I had grown accustomed to the new limitations on my life. I rarely go out at night, and most often when my kids go to bed, I do too. I know I’ll never be the kind of active mother and wife that I once was and thought I always would be. I have been “living” like this for a few years now; living with an invisible illness.  

We all have our struggles. Some we keep invisible to the outside world, others are more visible. As someone with the invisible struggle, the one that you can’t really see if I’m wearing makeup, but you’d notice if you knew me before and saw the reduction of life in my eyes and the dramatic 50-pound involuntary weight loss. I don’t “look sick” to most, but trust that I feel sick every moment, and every minute for me is a gamble.

From the moment I was diagnosed at the Yale Lupus Center, I agreed to be part of an anonymous Yale Medical Trial, offering myself and my body to be tested and utilized to try to find something that might help others (and maybe me) live with Lupus. I know there is no cure, but I had hoped for some solution to put me in remission or make living with the pain more manageable. 

My medical team of over 17 practitioners focusing on the various aspects of this illness, including the psychological impact, are the most amazing people I’ve met on this journey. They are a rare breed of doctors who are open to all forms of treatments, including homeopathy, to simply identify what works for various Lupus patients.

I have been, and continue to be, so grateful to my family, friends, and my medical team for supporting, loving, and helping me through this. After constant therapies and several opinions from other Lupus facilities throughout the country, I now find myself at a dead end.

And then the worst happened on October 11, 2019, just one day before my 42nd birthday. I received a call from my medical team to meet with them and my husband. With tears in their eyes, I only heard the following words: 

We’ve talked before about how 98% of all Lupus patients live a full life, and we are so sad to report that you are part of the 2% who will not. We want you to enjoy every moment you can with your family while your body will allow. We need you to do what you need and what you want as you don’t have long to live.

At the time, they gave me 3-4 years and all I thought was, “What will my boys and husband and parents do!?” 

Then the holidays came and went, and I pushed myself to cook everything and maintain normalcy. I pushed myself to celebrate my 10th wedding anniversary with my husband.

And now, I have found myself in the hospital or on bed rest since January 3. I felt it couldn’t get worse, I feared that I’d spend the majority of the rest of my life in my bed.  

The doctors asked to meet with us again…

We are so sorry, but your prognosis is much worse than we thought. We are certain that you have a year to 18 months. There is nothing we can do but try to keep you comfortable and allow you to go on all the trips and adventures you’ve planned for your family.  

And again, all I could think was, “I won’t get to see either boy graduate elementary school, what will my husband do, what will my parents do?”

The funny thing is, I’m not scared to die. But I am terrified of losing this battle and abandoning my family. That may be confusing, as for most people, they ultimately amount to the exact same thing. Yet, for me, there is a distinct difference.

Dying itself is a basic fact of life. I’m terrified of losing to Lupus because I know what it will likely entail: a slow, painful, and frustrating deterioration of the life I know and love. I’m terrified of the tsunamis of fatigue, as they dictate my day. I’m terrified of the brain fog because my mind is by far my favorite part of me, and the idea of regularly struggling cognitively absolutely crushes me. I’m terrified of the joint and muscle pain, fevers, headaches, and the long list of other symptoms that go with this dreaded disease. I’m terrified of my boys growing up without their mommy.

We live in a society that not only values health and fitness, but that also suggests, not too subtly, that anyone could be well with the right attitude, with positive thinking, and with faith and good humor. I try my best to live up to those standards and continue to do all I can. Not only for myself but for my family and friends for whom I strive to be present  

We all have our struggles, we all have the one invisible part of us that we don’t let out. But I have nothing else to lose. I can only share my experience and hope, on some level, I leave this world with a bit more empathy, compassion, and understanding of each other’s struggle.

Meredith and her husband Scott have been Fairfield residents since 2010. She is the mother of two beautiful young boys, and she works as the VP of Branded Events for a 2000 person international consultancy. 


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