I love that blogging is a kind of conversation. I read something on one blog, something else on another, get to thinking and the next thing I know I’m putting a post out there that adds to the conversation.
Today I read two that got me writing this one. The first was a post by Jenni Prokopy (aka ChronicBabe) called “Is chronic illness actually a good thing?” The premise behind it is that it’s all about your attitude. You can look at it as being a negative thing with all kinds of negative effects on your life, or you can look at the positives (like it teaching you to be more accepting) and consider it a “good thing.”
She talks about a friend that is always “fighting the good fight” against chronic illness and focuses on the negative aspects in her social media – and how it would be nice to sprinkle in some positive things.
That post got me thinking – first of all, I don’t think “chronic illness is a good thing.” I think you can have positive things come out of your experiences – you can learn things about yourself and others and what’s important in life and how to accept yourself and deal with change, and a whole host of other positive things you can gain from the experience. Much of it I agree with. We are “living” with these diseases and if we focus on the positive in our lives it does help us “live” with the not-so-positive. I appreciate her post and her work in general. And like most writings I appreciate, it caused me to think and reflect on myself – which lead to this post! 🙂
But I feel the aspect of having the disease is not a good thing. The pain, fatigue, taking time away from being with my kids – I can never call that a “good thing” no matter how many positive lessons I take away…time that I can’t be active with my children will never be “good.”
However, I also got to thinking about my own writings as a result of her post. I do write a whole lot about the negative aspect of having this disease. I do so for a couple of reasons – first because it’s been pent up inside of me for a very long time and I have a difficult time verbalizing it to friends and family so this is my outlet, and second because I want this blog (and the resulting book) to be a resource that autoimmune disease (and other chronic illness) sufferers can use by sharing it with their friends and family as a way to help them understand what it’s like to live with these issues. I want it to be a way for people to “voice” what’s going on with them. And it has been that – I get emails and messages and reviews saying they used it in exactly that way and thank me for it. So, yes, I do write a lot about the negative side.
But I also have written about some positive things, and in case it’s hard for you to find those on my blog (and for my own sake – to take a moment to appreciate the positives that have come about as a result of this struggle), here they are. These things have all been talked about in at least one post up to this point:
- I have learned to advocate for myself within the medical system and I have encouraged others to do so as well. I’ve learned and shared information about firing bad doctors when you’re not getting the care you need and deserve, about not taking diagnoses on blind faith and face value, about being pro-active with your medical records and history and being an active participant in your medical care. I’ve come a long way in my self-advocacy and I’ve shared my experiences with what didn’t work, how I reflected on those things, and how I’ve changed things for the better.
- I’m learning to focus more on realistic expectations and letting go of my fear of what others will/do think of me. I still have a long way to go with this, but baby steps are still steps in the right direction.
- I’m strengthening my children’s abilities to be empathic, caring, sympathetic people. They’ve always been that way and it’s in their nature anyway, but watching me deal with this has helped them develop these things. They will not grow up judging people that “look fine” for being unable to do something. They will understand that there are invisible illnesses and that we never know what struggles someone is going through by looking at them. I’m raising two people that are good people – and watching my struggles is a part of that process.
- I’ve been able to be a voice for others as they share my writing with their friends and family members as a way to express what they are going through. I’m super proud of this one and it makes my struggle have some “meaning”
- I’m increasing awareness for autoimmune disorders and Sjogren’s Syndrome – increased awareness leads to decreased frustration and time to diagnosis for others.
Yes, there are a lot of struggles. Yes, I write about negative aspects. But writing about them, sharing them, processing them, is part of the process of accepting them and living with them.
The second post I read today that made me think about this same train of thought was “What’s Wrong With Me” by Meghan O’Rourke in The New Yorker. I’ve read it before, but I saw the link on facebook today and read through it again. In it she describes her journey with autoimmune disease – years of frustration, non-diagnosis, thinking it was in her head, not being able to put the pieces together, changing diet, feeling better, having flares and feeling worse, being so hyper-vigilant about her diet and lifestyle that it then feels like it’s trapping and defining her rather than the disease doing it (which the change in diet and lifestyle was supposed to fight – the feeling of the disease defining you).
In it she wrote:
“The real coming to terms with autoimmune disease is recognizing that you are sick, that the sickness will come and go, and that it is often not the kind of sick you can conquer.”
I think I can get on board with that. I think that no matter how many positives I can identify in my life that have come about as a result of this struggle, I don’t think I can ever look at the struggle itself as a “good thing.”
But I think I can learn to live by this idea – I’m sick, I didn’t ask for it, I don’t want it, it’s not my fault, I will feel better sometimes and worse at other times, there is no cure, there are things I can do to ease symptoms (eating better and paying attention to the needs of my body) and things that will make it worse (toughing it through an intense weekend of kids’ activities will lead to fatigue and flares) but it will not go away.
That is my reality. That is the parameters I can either choose to work within and “live” with chronic disease or I can continue to deny, want to be my “old self” and fight against things I can no longer do.
Don’t get me wrong, there will always be times of grief, loss, anger and sadness at various moments in life when I “hit a wall” with something – that’s the nature of the ebb and flow of these disease – there will be times that are worse and no matter how optimistic I try to be (and despite what you may think reading all these posts, at my core I am an optimistic happy person), that loss will hit me from time to time and cause these feelings.
And trying to force myself to never feel the grief, loss, anger and sadness – pretending I won’t have times with them – is another way that I have trapped and defined myself just as Meghan talked about in her story of hyper-vigilance of diet trapping and defining herself.
I think my balance is take time to identify, remember and appreciate the positives in life – both those due to my journey with this disease and otherwise – but understand and accept that I will have moments that are not all rainbows and unicorns and that’s OK as well. The post by Jenni reminded me of the first part of that while the post by Meghan reminded me of the second.
Clear as mud? Did anyone follow all of that?