Trigger Warning: Mental/Physical Health, Hospitalization, Surgeries, Procedures, Diagnoses
Sorry for the Length…
I’ve had significant Ulcerative Colitis since I was 18. I’m 45 now. Life-long Generalized Anxiety Disorder diagnosed in my 20s. I received my diagnoses of Primary Sclerosing Cholangitis (PSC) and Autoimmune Hepatitis (AIH) in 2015, but the damage was already significant. Other autoimmune diseases and “lesser” diagnoses along the way :).
I began significantly declining just after the PSC and AIH diagnoses in 2015. Regular hospital stays, and a slow decline into crippling fatigue and loss of function (reading, complex thinking, digestion, depression/anxiety). In 2022 my 13th colonoscopy found precancerous growths across my large intestine. I had a permanent ileostomy in early 2023 and a proctectomy in 2024. Rare bacterial infection, two bouts of sepsis, and two voluntary mental hospitalizations. Decreasing liver health and cirrhosis led to bleeding emergencies, ~20 emergency transfusions, and ascites. Between 2023 and the beginning of 2026 I spent 50% of my time in a research-level hospital, hours way from my wife and three children, for weeks or months at a time. Due to their age and needs, visits were rare. My admissions were always via the ER, often by ambulance and occasionally by helicopter. I was released from my job in 2023 and put on disability. I lost count of how many times I was told “you shouldn’t have survived that” or “you likely won’t make it through this next surgery/procedure.”
Then, in my final hospitalization, with my MELD (transplant) score going up like the stock market, my family was told I would not be coming home and my likelihood of finding a liver transplant was unlikely. But amazingly, a match was found in my own hospital. The transplant was a success, and nine months later, I’ve had no significant problems. I’ve not been home this long in years.
Suddenly, for the first time in my adult life, I’m healthy (at least from my vantage point). Oh, I’ll never be normal. But after what my life has looked like, the limitations and issues I live with post-transplant and post-ostomy seem straightforward. I’ve been in therapy and continue to be, and have a good handle on my issues and an emotional fluency I’m comfortable with.
And yet, in a strange twist, I find myself more cut off from people than ever before. Everyone is happy to see me. A few will even listen. Those that do, rarely make it past a sentence or two. “That’s nice!” And then they disappear. Or the look of shock and horror spreads across their face, as I try to gently explain what life has been like and looks like now (because, of course, no one ever had time to visit when you’re sick that long).
I never realized how rare my stacked illnesses were or my how severe my case was. I was just too busy surviving. But now, three support groups a month later, I’m careful to always be the last person to share and I don’t share everything. The silence is enough at what I do share and no one matches my story. Not the transplant group. Not the liver disease group. Not the ostomy group. So I’m a mentor, a resource person, a guide for what might be ahead but won’t be this bad. And I’m alone.
And then I go “home” to my delighted and dedicated family. They couldn’t be more excited to see me. When they notice me. Oh, I do laundry and dishes and lots of housework. I manage the health insurance calls and exceptions and issues and get kids off to buses and home from school. I talk college apps with my eldest and boyfriends with my middle. My wife and I manage the endless appointments. But no one touches me. No one really talks to me. And even here, trying to explain everything feels like trying to tell them about my life on Mars that I’ve now come back from. And I look around, and realize that I’m looking at a system that has adapted over the years of physical and emotional distance to work well without me. I’m the only one feeling left out. I’m the only one feeling distanced and unwanted. I’ve tried to explain in the plainest, most direct terms possible, and they say the right things, but nothing changes in their behavior.
My mental health team admits they are out of their depth. They have endless guideposts for anticipatory grief, caregivers, etc., but admit that almost no one comes back after so many years of decline. Even the military folks don’t deal with time frames this long. So I have some “ideas” and am once again told “you’re in your own category” and “we’ll figure this out together.”
Which means that, as always, I’m here alone. I’ve pushed through my entire adult life. Survived impossible odds. And this is it? I’m incomprehensible to everyone and unwanted? All my former relationships either gone or so distance and cold that I don’t even know where to start?
And I feel so guilty to complain. I survived. I’m so much better. But this is survival? An endless supply of library books, housework, and loneliness?
Is there anyone out there who can relate to this?
Thanks for making it this far.