God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.
Each day I say that prayer. Sometimes I repeat it over and over when I’m feeling especially anxious, down or overwhelmed. I’ve learned in this mentally/chronically ill life I lead that there are so many things we cannot change. We can’t change test results, diagnoses, doctor’s orders… So what can we change?
I’ve been struggling to answer this question myself for some time. Label after label, diagnosis after diagnosis are constantly being added to my medical chart. At first, it was just one, then two… now it’s over a page long.
I hate labels. I understand that the medical community writes diagnoses so that all of the doctors can speak the same language, but each time a new “label” is added to my chart, I can’t help but feel a little less hopeful and optimistic.
I know they are just official diagnoses, not who I am as a person. But once you’ve started on this journey, you realize that there is no turning back. Everything compounds on each other. One thing leads to another. You take one medication only to need another to mitigate side effects.
As the labels have continued to pile up, especially in the last few months, I try to remember my partner’s words— “You’ve always had this problem, now you just have an official diagnosis.” I can’t change my diagnoses. I can’t change what my body decides to do (or not do). I have to find the serenity within myself to accept that these challenges are a part of my life, for now, and for forever.
I’m still going through the grieving process of my old neurotypical self. With each diagnosis, I get a little bit further away from acceptance. But at the same time, when test results come back showing that I do in fact have x, y, and z problems, it becomes validating in a way. I am no longer a patient complaining of imaginary symptoms; the tests confirm there is something wrong. It’s a bit of an oxymoron, right?
Courage to change the things I can…
I rhetorically asked earlier what can I change? So far in my journey this is what I’ve learned I have control over:
1. My support system—Some people in my life just weren’t able to deal with my newfound illnesses. They were either negative, critical or overly pitied me. Those people are no longer in my life. I barely have enough energy each day to do one or two things I need to do, and I certainly don’t have the extra energy to deal with people who just don’t get it or put me down.
2. My “job”—One of the things I’ve had trouble reconciling is the idea of me being a “contributing member of society” without having a typical 9-6, Monday-Friday job. My job was such a huge part of my identity, and now I am learning to redefine myself outside of what my career was. Someone recently wrote an article on being a “professional patient” and yes, that is me to a tee. I am also a writer, a blogger, and an editor. Do I get paid? No. Do I go to a physical location every day to go to work? No. But the great thing about what I am now doing is that I can do it anytime, from anywhere… even at home, in bed, in my pajamas, even when I’m not feeling well!
3. What really matters in life—Earlier I talked about the negative people in my life that I have cut out or those who just dropped out on their own. But you know what? Some people I have never expected to have stepped up in big ways. I have developed a tight-knit support system, headed by my partner and my mom, and my ride-or-dies. I have amazing friends from online support groups, who check on me more than almost anyone else. This—love, family, friends—is what matters in life.
4. Where I spend my spoons—I kind of alluded to this earlier, but as any true spoonie knows, we only have a limited amount each day. I prioritize what I want to get done in the day. I look at my schedule the week before to see what I can and can’t do (by my “schedule” I mean doctor’s appointments and therapy). I no longer waste spoons on silly things, and I’ve actually realized that asking for help can be much easier than pushing yourself to do something you don’t have the spoons for because that can wreck us for days.
5. Attitude—The last thing, and probably the most important, is my attitude. I do have control over my attitude, or at least how I respond to things. I’ve worked so hard to stay positive for so long, and lately, it’s been a little harder to keep that positive outlook on life. However, as I mentioned above, I have an amazing support system who always gets me back on track.
And the wisdom to know the difference…
You would think it would be easy, placing each thing you can and cannot change into their respective baskets. But it’s muddy. The waters are murky. By talking with my loved ones, writing and going to therapy, I am starting to learn the difference.
Hopefully, this leads me closer to acceptance in the future. With each new label, I grow a little wearier, a little more despondent. It is then that I reach out to my support system, I make grateful lists and I repeat The Serenity Prayer over and over until I feel better. Sometimes it doesn’t work. Sometimes I still fall into the clutches of depression and anxiety.
But the important thing to remember is that we must try. We must fight. There is no easy answer on this journey of ours. There is no magic pill, no miracle cure. But there are millions of people out there who are suffering like we are. Our loved ones, who watch us suffer, suffer with us. On the flip side, there are people out there who will step up and be a part of your support system. There are people who will help you when you need it, calm you down when what I call “anxiety girl” starts getting too ratcheted up, and there are people who will love and support you.
Maybe you already know these people. Maybe you don’t. But they will find you. The Universe has a way of connecting us with the right people at the right time.
Find the good in your life to the best of your ability, but also be the good.
Energy is a powerful thing, and if you continue to put out good energy, it will come back to you. You will not know when it will come back to you. You won’t yet know how. But one day, it will come. And it will overwhelm you with the rewards of continuing to be the good, to the best of your ability and depending on how many spoons you have that day.
Don’t give up, Warriors. My mom always says (along similar lines of The Serenity Prayer), “Hope for the best. Prepare for the worst. Accept what comes.”
This is not the life we would have chosen for ourselves, no matter what disorder, disability or disease you (or your loved one) suffer from. All we can do is move through it, day by day; sometimes just hour by hour.
Find the good in your life. Be the good in the world. Acceptance is the last stage of grief, and while we might think we have reached acceptance one day, the next month or even the next day we can be right back in the troughs of the cycle of grief.
Find a mantra—something you can repeat to yourself when things get bad to remind yourself to hang tough. At first, mine was ‘ride the wave.’ Then it was ‘it’s just down season.’ Now, it’s a combination of ‘it’s just down season’ and The Serenity Prayer. Repeat it over and over to yourself, every time you feel like life has just knocked you down another peg (or five).
I understand all too well that every day, every single day, is a struggle for the chronically and mentally ill. Some days are harder, some days are better. But it’s always a struggle. It’s always a fight.
If you haven’t gleaned anything from this article, then take this: Always hold on to your hope.
With hope, anything is possible.
With hope, we can survive.
With hope, we will pick up our swords and shields and rise up to be the Warriors we are and live to fight another day.
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