The Undiagnosed Disease Network
The Undiagnosed Disease Network (UDN). Sounds like a perfect place for a medical mystery like myself to go for help. Recently featured in a New York Times article, the association affiliated with 12 hospitals is an impressive and potentially hopeful program for patients who have ailments that can not be diagnosed or identified. If you are accepted, the team of different specialists go to exhaustive lengths over the course of one week to identiify, diagnosis and potentially treat what ails you.
Last spring, my hero primary doctor did apply to the program on my behalf, with strong accompanying recommendations from two other consultants (including a very senior one at Johns Hopkins).
When did this happen, you’re wondering? Did you miss a blog post?
No, you didn’t, because my mother and I didn’t tell anyone. We carried it, waiting the first three months for initial word if they would review my case. When we received the email asking us for a thorough synopsis of my medical records, we hastily combined the 200 plus pages. (You wouldn’t believe how many more hundreds of pages we did not include. )
We told only a few within our intimate circle to keep ourselves from bursting from the strain. I heavily doused any hope or expectation from something positive from this experience. If I was accepted, it would mean one week admitted in a top-notch facility working with the team of UDN specialists looking at the whole. Not individual specialists who come on their own time schedule, but a team of different specialists all together at once, presumably thinking outside the box.
The possibilities from this scenario could fuel a city—which, in turn if it all goes south, could crash one as well.
Friendships don’t easily survive a continuous tidal wave like my health is. My friends, from pre-sickness to post, still, close to 17 years later, want me better. Or at least to know, so we can create a cure to get me better. So hope is disproportionately great, and all therefore all the more potentially devastating if it doesn't turn out.
To spare them that, and perhaps to spare myself an even greater tsunami, I didn’t say a word. I always hear that sharing with others, helps, but I haven't found that to be the case. Living with severe limitations without explanation or hope for years on end despite continuous searching, is really hard on all forms of relationships. I have certainly lost friendships and strained family relationships through this. Perhaps because I understand the stress, the frustration, and for some the anger that my health circumstances can cause them to feel, it doesn’t hurt me quite the same when friendships end because of it. I’m not really sure, but I think a part of that is because I understand that love or respect isn’t the reasoning. [ work now?]
What I do know, is that when I received the email from UDN, informing me that my case was not accepted as it failed to meet the criteria of seeming solvable and/or having good results for the treatable aspects, (bad results might negatively affect their overall stats, and therefore funding), that it numbed me to the core. This news was something so deep, so final, and seemingly a death to hope, that I simply froze and locked it away.
I was frozen in time, except time doesn't freeze. I wouldn’t let my going forward end, because I was afraid if I dealt with the emotional fall out I would let my disciplined drive of going forward die. So, I froze it. Vacuum packed it and kicked it to Siberia. I would begin a slow thawing when my ability to process it had had time to adjust, and then slowly deal.
It’s been many months, and I’m still not sure I’m there yet, though I have (mostly) resigned to their decision.
My pillars kept telling me to hold on; that it sucked, but it wasn’t an ending. In this, I have learned they were right.
It just sucks in navigating for that next door, the next potential medical portal in my never ending quest for answers.