Sunday, January 19, 2014

Living with a Chronic (Unknown) Illness

It's been so long since I've felt "normal" and I forget what that feels like. I always hope that it will magically go away, or that I will find that one doctor who has all the answers. Both have yet to happen and I'm really banking on the latter. 

I don't look sick and I don't have anything on my scans, tests and lab work that are abnormally high or low. I have some borderline highs and lows on my lab work, but nothing adds up. I just have a random collection of symptoms and have some mild discrepancies on my tests. 

I've seen so many doctors. Most of them believe I am just attention seeking, or even drug seeking. Some think I'm delusional and depressed. A very small percentage actually wanted to help me and believed there is something going on, but cannot pinpoint it. 

I can tell you it's not (what I call the BS diagnoses); IBS, chronic fatigue syndrome, depression/anxiety... Let me explain. Why I consider them bullsh*t diagnoses is because a lot of people get that diagnosis thrown at them right away when they have something else. I don't know how many times doctors have said I have depression and IBS. I've tried several medications and diets knowing that the diagnosis was wrong and that they needed to look again at my records and run more tests. But many times in the early stages, you have to try what they are suggesting or they won't help you out anymore. 

Other people feel like I should be better by now or that I'm already better. Some people forget I was/am sick in the first place. They don't understand why I can't work (they don't consider my self-employment a job) and they believe I'm just being lazy. While others bluntly blame me because apparently I brought this on myself (according to them). In their eyes, there has to be a reason and a learning experience... I think that's BS too. 

I was planning on going back to Mayo this year, but unfortunately, I don't think I'll have the means to do it. It's a long story, but it all comes down to money and people not wanting to do their part and/or help out. I don't ask for much, but when I do need help, it seems like everyone runs the other direction.

I feel if I were to get a diagnosis and get better, so many things would immediately change. I would finally get out of this vicious cycle and maybe start to feel normal again. 

Yes, there are times when I get overwhelmed, upset or angry about my situation. I get frustrated that people hold me to an unreasonable standard or unfairly judge me. And I am disappointed with how many people have left me behind. I definitely hate when people insinuate that I'm don't deserve any better. That I just need to deal with it and settle. But I have to remind myself that I still wake up everyday, so I need to make the most of it. It's okay to be upset because it is a normal reaction to this turmoil. I have to remember not get so lost and engulfed in it. 

I'm trying not to make this post seem like a downer. I just wanted to explain my perspective on it. And please comment if you are going through a similar situation or if you have a diagnosis. Or if you know anything about autoimmune diseases, especially Sjogren's syndrome, scleroderma or primary biliary cirrhosis. 

I'll leave you with this quote from Audrey Hepburn, "Nothing is impossible, the word itself says 'I'm possible'!" 


  1. Hi Lauren! I found your blog and have been cruising around.
    Yes, many care practitioners dump hard to peg cases in the catch bin diagnosis'- IBS, depression , chronic fatigue. I think these three are actually symptoms of other larger issues, not in and of themselves a diagnosis.
    I wish I could agree that having a name for your illness will mean there is a treatment and you will feel better.Although some people find a diagnosis of sjogrens or PBC means a relief of some symptoms most continue on with a progression of deterioration. I don't mean to discourage you but perhaps temper your expectations
    .Having a clear cut diagnosis does however make explaining how you are feeling and how it impacts your life to others much easier.
    My life three years plus out from concrete diagnosis of Sjogrens syndrome finds me in worse health now than I was then. Depressing but true and common place for most individuals with it. It is chronic and unlike many autoimmune diseases does not have periods of remission- its progressive.
    I'm sorry you've lost people over your illness- it is one of those things that people cant fully understand unless they've been there themselves- and we ARE out there! be well - glad to have found you!

    1. Thank you for all your insight and advice. I really appreciate it.

  2. Thank you for all your insight and advice. I really appreciate it.