Undiagnosed: A Story of Purgatory (Part 1 )
Because I’ve really needed a break from a lot of things around me this year, I’ve tried to make the best decisions that would only affect my health in a positive way. In making that proactive decision, there were many, many things put on the back burner. One of those things was social media; I decided that I would put a halt on what I decided to share with the public. In the times that I have posted, I wanted to make sure that I was as transparent as possible, but also keep private details confidential.
But truth be told, over the last few years, I’ve had a very hard time being transparent in what I choose to share with family, with friends and with coworkers. Truth: a hard thing to live up to if you don’t know why certain things continue to happen without any education as to what it is, why it’s affecting me and if it’s something I should really tell others.
I struggle with so much of this, as there are so many things… symptoms, rather, over the last few years that have been happening with no visible or obvious cause. I’ve tried my best to ignore what I’ve been able to – to brush off not understanding what the hell is going on inside my body. I’m so much of an inconvenience with the diagnoses I’ve already had, that it’s really hard to talk out loud about anything. I feel like I’m an inconvenience in many relationships I have tried to maintain. But the truth is, if you don’t understand what’s going on with your body and live in a world full of anxiety waiting for the “what if’s”, there are not a lot of people willing to go out of there way to accept your faults (excuses) if you yourself doesn’t understand.
Living with the diagnoses I currently have, it’s hard to maintain relationships, whether it’s friends or family.
There are very few details I share with anyone, because to be honest, it’s easier right now to live in denial of what “may or may not” be something.
I’ve had unexplained medical issue
s or incidents for years that have yet to be explained. If I do share, I feel like I get eye rolls, silence or no reaction at all. But the worst of all, is knowing there are whispers when I’m not there or when I walk away. The last thing I want is sympathy, and I think my closest of friends get that. I’ve written a bit about Empathy vs. Sympathy & to differentiate the two can be hard for some people.
But what about the times when I DO find myself reaching out? Most of the time, people don’t know what to say. So, they begin to be more distant, less in touch and their patience is worn thin. Slowly but surely, you find yourself on the “Uninvited” list. Do I blame them? It’s a double-edged sword. I didn’t choose to be born with the disposition of developing autoimmune genes, so I can’t fully blame them for leaving when they didn’t sign up for “this”…
But what about me?
There’s a crowd of you that just read that and out loud said “What about you!? Isn’t this ALL about you!?”
Nothing about being sick is about me – about my character. Yet it affects everything around me.
People who are quick to judge mostly say “well you must be getting some good rest!” No. Or “Well you’re filling out a little bit and have some color in you!” No no no. “Well it must be nice to stay at home and sleep all day.” I can authentically say that NO day home is a “fun” nor “relaxing” nor “restful” day. If I’m home, rarely there is a hug that I am not hugging the toilet or using it in some shape or form. On really fun nights, I have two special blankets I keep with me and just sleep in the hallway or even on the bathroom floor – and yes, the bathtub has been a place I’ve crawled into, cried in and fallen asleep in.
A few weeks ago on a Saturday morning, I had an episode that was quite scary, but I knew I could call my neighbor. Thankfully, she was home. This has happened before, but in the past I have been completely been unable to move. This involved my hips and I couldn’t even try rolling over without screaming and crying. As she walked in, she saw that I was still tucked in the bed, on my stomach unable to roll over. (Thankfully, she had a similar background as me, but has since retired, so she could help roll me and pick me up.) She asked where we could start and I told her I couldn’t roll over on my own and that I needed to roll towards her. All the while I was crying. She handled all of this in the most amazing way possible. Once she somehow got me cradled on the bed, she asked what we need to do next. I told her I needed to go up the stairs and go to the bathroom. She helped me step by step all the way up the stairs and got me into the bathroom, as well as back down the stairs. When I say I couldn’t walk, I literally could not walk without the assistance of wall-walking and using different pieces of furniture to help hold me up.
This was a new threshold of pain I’ve never felt… 11/10. After a few hours on the floor, I was able to get up again, but the pain was absolutely excruciating for the next 48 hours. In times before, I have woken up and my body has been paralyzed from my neck down. There have been times since, where symptoms replicate and mysteries grow deeper. When I was living in Milwaukee in my studio, it took all of my hands after an hour of laying there panicking, I was able to grab my phone with my fingers and ask Siri to call my good friend and upstairs neighbor. He picked me up all in one swoop & set me on my chair. I remember him trying to move all my limbs and stretch out everything I possibly could. That was the first time I was genuinely scared no one would find me. At the age of 22, I feared living alone – something that I will NEVER give up, as this is the only thing that helps keep me as independent as I can be.
Can you explain trying to tell someone, especially a friend, or even more important – a doctor about symptoms like these? I’ve had the most disrespectful comments and eye rolls. I can’t explain it, so how can I expect others to understand what I don’t even how to explain it? Does a normal 30 year old woman lose the ability to control her bladder during the middle of the night? How come I constantly shuffle, fall all the time and lose consciousness for a split second.
Nothing about any of this seems normal.
Nothing about this is easy to explain to others and nothing about this is what I share with others. Over the last two years, I’ve come to fear “what’s next?” I’m on a teeter-totter of circumstances that never seem to keep my feet on the ground. The weight with my teeter never seems to match my totter. And it’s been hard to deal with. My pain never seems to adjust to anything. The times I’ve been to the ER for pain management, I’ve actually declined IV pain meds because I get violently ill about 12 hours later, because my body can’t take it. I’ve been told by two doctors that I my arthritis is autoimmune and 2 others that have absolutely no idea what’s going on with my body. All four I’ve seen have each had the same response “it seems like we need to get your Crohn’s under control.” Everything in my body has an inflammatory response, so when I’m in an actual flare, my counts and levels actually show very little infection or inflammation, making it extremely hard for doctors to figure out.
Friends, this is purgatory.
I was ‘lucky’ to be diagnosed within 5 -7 years after my IBD symptoms actually showed. Some rare diseases take years, 100 different doctors and then specialists who of course, not covered by insurance. The only thing I feel lately is Fear & typically, I’m not full of fear. I’m definitely not brave, not a hero and not a perfect role model… I guess what I’m trying to say is, being in this position sucks, but I also know how many other people are in the same place as me physically and mentally, and knowing they are still “The Undiagnosed”….. sucks.