Although it is rarely recommended, we recently had a very interesting scientific 'what if' conversation. We were discussing a potential underlying cause of my health complications - from the simple to the enormously far-fetched.
I don't like to have too many 'what if' conversations. That can lead to panic or concern about the future, or to depression and resentment about what else I may have been able to or accomplish in life. With that said, I find these specific brainstorming sessions to be interesting, and even a bit comical.
Here are some of the underlying causes that we came up with:
1. A Genetic Mutation
It is obvious that we are far from understanding a human's entire genetic code. There are only a few diseases and a few areas of our genetic makeup that we can isolate. It is possible that there is some 'simple' genetic mutation, a missing link, an additional link that should not exist, or an obstructed part of my genes. We are already aware of one genetic disorder, what if there is something inherently wrong about my genome?
2. Mismatched Organs
At 16 years old I found out that I had a Dermoid Cyst on my right ovary. As it was removed and evaluated, it contained hair cells, skin cells, muscle cells, and even some calcified cells (evidence of teeth). At the time it was explained that one of my own eggs could have spontaneously partially developed at some point (obviously without the missing half of what is required for the creation of life). It was, however, on the outside of my ovary. I also found out later on that I likely had this from birth, and that it was possible it had, at one point, been a twin. So, what if I developed internal organs that were supposed to be the organs of my twin? What if my organs are not even mine?
3. Alien
What if I am actually an alien and was not meant to survive in this particular atmosphere... so I have been slowly deteriorating from the inside out?
4. Obstructed Development
When I began to seriously, and quickly, deteriorate with no apparent reason, it was suggested that - perhaps - my body had stunted development of my immune system. What if my body simply did not properly develop my immune system, and that that is why it has been especially confused?
5. Additional Immune System
Rolling with the idea of a massively screwed up immune system AND the possibility of a twin: what if I developed two separate immune systems? One that fights off colds and small infections and another that attacks my entire body? What if I have an additional - and highly problematic - immune response that should not be there?
6. Unknown Disease
What if my mark in life is going to be that I have a new disease that no one has quite discovered yet? It's true that a few of the diseases I suffer from tend to go hand-in-hand. IBD and Raynauds, for example, tend to be seen together in most patients. BUT, I also do not always have the 'classic' presentation of my other illnesses. I have Ankylosing Spondylitis, which is a specific form of arthritis. Arthritis IS a common 'accompaniment' to IBD and Psoriasis, but is usually in the form of Rheumatoid Arthritis or Psoriatic Arthritis. Also, I was told many many years ago that I have many of the signs of developing Lupus (which my grandma was also diagnosed with), but despite that risk, no Lupus (yay!). Furthermore, the appearance and then disappearance of the Primary Sclerosing Cholangitis and a possible nephritic disorder have had my doctors perplexed, not to mention the extremely strange allergic reactions, the Recurrent Pancreatitis, and the Early Onset Macular Degeneration. Not only is that last disease entirely inexplicable, but it also has no place with any of the other diseases, except maybe the Hereditary Angioedema.
The truth is: I have been told time and time again that I have too many different system malfunctions that are not connected. This led various physicians to attempt to find a phantom underlying cause - with no luck as of yet. I definitely wonder sometimes -> what if I have something that has not been discovered yet. I guess I would get a disease named after me.... not exactly the type of legacy I was hoping to have.
7. Something Simple
It is entirely possible that there is a simple cause for everything I am dealing with. It is a bit far-fetched, I guess, and a very large case of wishful thinking, but it is possible. Maybe I caught some sort of undetectable infection that damaged my immune system. Perhaps I have some damaged cells that are tearing across my various systems wreaking havoc everywhere they go, then going dormant in some areas. Maybe my body's immune system is essentially 'blind' and begins to attack anything that feels out of place. Perhaps there is a minor communication disorder within my brain. What if the answer is so overwhelmingly simplistic that no one has ever even thought to consider it?
Now, if I had trillions of dollars at my disposal, I could have spent a lifetime looking into some of these 'what if' ideas. I could check the blood type of my organs to that of my blood, or skin, or brain, etc...
I could have a lab dedicate their entire careers (their entire lives) analyzing my DNA for anomalies. I could have them test me for every possible infection, bacteria, virus, parasite, bug bite, venom, coursing through my blood. I could give someone a book of all known diseases and demand testing for every possible answer. I could "House" my body until we found some sort of answer that made even just a little bit of sense.
As for now, I will continue to have random 'what if' conversations about all sorts of different causes for the variety of diseases I suffer from. I mean, I have always loved being a 'teaching patient'. That means that my case is looked at by students as well as specialists, to teach students about the anomalies and differing presentations of known diseases. Maybe a student down the line will be so enthralled with my case and my chart that they want to spend their career case studying me. What if the right specialist sees this article and immediately wants to meet with me (free of charge)?
A girl can dream!
Or maybe we will never know if I have an underlying disease, if there is a known cause for any diseases that I have (apart from the Hereditary Angioedema, of course), or why I have so many different issues that do not seem to connect.
I actually find it comforting that I am so fascinated by all of this. It turns out to be a very effective coping strategy.