A while back, I also started following a website called The Mighty. It is a website dedicated to real life stories of people living with disabilities, disease, and mental illness. The most recent article that was published caught my attention and even more specifically, a particular quote:
“Accepting the fact that I will never get better is what has allowed me to live my life and continue to work towards my goals without waiting to ‘get better.'” – Joan Elizabeth.
Light bulb moment.
This is what I have been doing…
Waiting to get better.
And working to BE better, no matter what the obstacles are.
It’s no wonder I have fallen into such a dark hole these days. Since my symptoms first started wreaking havoc on my body in 2008, I have been in a constant battle to get better and overcome all the obstacles and challenges that get thrown at me healthwise.
I always thought this was all good stuff. Stay strong. Beat the odds. YOU CAN CONQUER ANYTHING! Sweet baby Jesus, I’m annoying myself even rereading what I just wrote here.
Don’t get me wrong; I am very well aware that there is no cure for Sjögren’s syndrome. Will there be in my lifetime? I highly doubt it. Or maybe I just don’t want to get my hopes up too high about whether there will be a cure or not. However I really did believe that if I found the right doctors, followed the right eating plan, got enough rest, and just TRIED HARD ENOUGH, that I could beat this thing into submission.
If I just prayed enough or had enough faith, maybe it would all go away.
If I didn’t let myself focus so much on my symptoms, they would go away.
I do think that a positive attitude can go a long way. I also think that the medical community is very much lacking in its treatment of autoimmune illnesses, so we do have to be our own advocates. But, just because I have done everything in my power to get better, doesn’t mean I WILL get better or even STAY better.
So the questions that then come up in my mind are: why do I think I am not good enough in my present state? Why do I think that I have to go to work every week in order to prove my worthiness as a human being? Why does the likelihood of being on disability the rest of my life make me feel like I am lesser in some way? Because if any one of you said that to me about yourselves, I would be all over you. I would tell you the truth: that no matter what your present circumstances are and no matter where you are in your medical/health journey, you are so worthy. I would tell you that your existence on this earth is not defined by a paycheck. Or by how well you can keep your house clean. Or by your inability to stay out of bed all day.
Although lately I do feel like this, I am not talking about completely giving up and resigning myself to a life in bed. But what if, I mean seriously, what if, I accepted the fact that I am not going to get completely better? What if I just accepted that there are going to be things in this life that I cannot do, such as working a part or full-time job? Or staying up past 6pm at night on a regular basis?
What if “beating my illness” is less about not having physical symptoms and more about learning to live with those symptoms more gracefully?
I’ve been waiting to get better for eight years now. My life has not stopped during that time, but everything I have accomplished, such as publishing my first book, has felt like temporary successes. You know, the goals that I work on while trying to get permanently better. And for those of you who know me well, you know that in a lot of ways, I AM better. I spend much less time in the hospital than I used to in those early years. And I guess that gave me false hope; that eventually I could make myself all better if I kept pressing on.
As the author of the quote wrote, I do have goals. For example, I have a lifetime goal of going to Ireland; something that has been on my bucket list as long as I’ve known that Ireland has existed. It’s a goal that my husband has encouraged me to pursue and would like to pursue it with me. For years, I have been postponing going, despite the fact that we already had the money set aside. I kept waiting to feel better and feel confident that I will be well when we travel.
Recently the reality hit me that if I keep waiting, I am never going to Ireland. So instead of waiting, we met with a travel agent yesterday and we are planning the trip for in six months, with trip insurance coverage of course. Instead of waiting to be well enough to go, I am trying to come to terms with the fact that despite all the precautions I can put in place for this trip, there will be times during the vacation, maybe even for the whole duration of the vacation, that I am not going to be better. It may make things a little scary for me, but I will be in Ireland, even if some of the days are in bed.
To me, acceptance is different than giving up. Giving up implies that I do not want to try anymore. It means becoming a victim of my circumstances. But acceptance? That’s about being at peace with where you are; even in the midst of the pain, the fatigue, and the uncertain future that so many of us face.
So for today, accepting my illness means that I am spending the day at home, mostly on the couch. It means sitting in a warm and cozy house, with my adorable pooch, and throwing my words out into the world, in the hopes that they will be of use to someone, somewhere. Today, acceptance means embracing what the larger dose of prednisone is doing to my body, both good and bad. It means that there is housework that won’t get done and errands that I will have to try again for tomorrow. It means being content with where I am at, in this day.
That where I am at in THIS day is more than enough.
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