After writing my post about Deja Vu and realizing that I’m pretty much exactly where I was a year ago despite spending 8 months working with doctors at KU Med (which equated to an average of 20% work-hour lost time with all the appointments and traveling back and forth), I started to feel like I was being too negative. Like I was complaining too much. I was spending all my blogging time talking about how my symptoms affect all the various aspects of my life and how I haven’t been able to find my “Dr. Right” yet.
But then I had an epiphany in the shower a few mornings ago (don’t all great ideas pop into our heads at moments like that!).
Yes, I’m no better off than I was a year ago (and in some cases worse). Yes, I still struggle with guilt, anxiety, fear, anger and sadness at how this disease has affected my life and the lives of those around me. Yes, I still think it’s incredible important to put a voice to how those of us that are struggling with chronic invisible disease feel – even if it does sound like I’m always talking about the negative aspects of things. And I’m not going to stop sharing those aspects of living with chronic disease because I think we should all be more open and honest about our struggles and not put forward the “facebook/twitter/instagram selfie face that shows everything in our life is great” all the time.
But the epiphany was when I realized I haven’t given up. I spent those 8 months working with Drs at KU Med because I hadn’t given up. I’m flying halfway across the country and taking three days of sick leave from work and three days away from my husband and kids to go see a specialist in Philly in a week and a half. I haven’t given up. I’m still fighting. So there is something to be proud of, to show other people that struggle like I do and read what I write – it’s important to be honest about how you feel even if it does make you feel like you’re constantly expressing negative things – you’re life is constantly filled with pain, fatigue, worry and so on. You have a right and a need to express those things. If you don’t express it all, it just sets up unreal expectations in everyone’s minds and that leads to more hurt and guilt. But even when I’m sharing and expressing those things, I’m still fighting.
I also realized that simply the fact that I feel guilty, even though I try very hard to know that this disease isn’t my fault and I didn’t choose it and I really have nothing to feel guilty about and I know that guilt is not that useful of a thing to spend a lot of time on – but just the fact that I do feel guilty means that I’m still the person I used to be. I can’t do all the things I used to do. I can’t be as involved and helpful as I used to be. I have all these struggles I’ve spent all these blog posts and an entire book writing about. But the core of me – the person that cares so much about the people in her life and has always tried to do whatever she can to help someone – is still there. If I wasn’t still that person at my core then I wouldn’t feel guilty that I couldn’t do those things much (if at all) anymore.
I’m still working towards acceptance of this “new life” with this disease. I have to accept my limitations, that my struggles are not going to end, that I can’t do and accomplish all the things I did and want to. I still feel the same pain, fatigue, fear, worry, sadness, isolation and yes, guilt, that comes with these types of diseases. I still spend time writing about these struggles and “negative” things to share them with the world to help others understand and empathize. But I haven’t given up.
I’m not sure what will happen if I return from Philly with nothing better than it is now (no better doctor to work with, no better treatment, no better outlook, etc.). I don’t have a plan for if that happens. It will likely involve a lot of tears, time snuggled in bed watching tv and a whole lot of recovering from another let-down, and possible some Ben & Jerry’s Ice Cream. But if it does happen, I’m sure I won’t quite fighting. Just like I didn’t after Dr. A, Dr. B and Dr. C during the past three and a half years.