Tackling disabling autoimmune disease with obstinance and humor.
Remember the good old days? The days when you could do anything you pleased without having to worry about the fallout? You know, back before everything became a massive daily struggle? When you could make a list of things you wanted to do, and actually do them? Those were the days huh? I miss those days. The days before chronic disease started calling the shots.
If you thought I was referring to pre-pandemic life, it’s no surprise. Much like the new national normal, the new normal of a person who has been handed a chronically debilitating disease diagnosis is often a bleak, lonely, shadow of the old normal with a big spoonful of suck and a side of struggle. It’s not a good time. I don’t recommend it. But,much like the 2020’s, if you’ve found yourself afloat in the sea of suck that is chronic illness, the only way through is through. There is no turning back, no time out, no rewind. It is what it is. So now what?
Now, as you’ve probably heard, its time to find your new normal. Before you panic thinking about recent examples of new normal and how much that tends to suck, take a deep breath and remember, this is still your life, you call the shots, and change is good. (No, really,I promise.) If there is any hope at all that you will find your way out of this sea of suck and back to the shores of something that resembles a normal life, you are going to have to make some changes. After all, doing what you have been doing has brought you here and, as you may have guessed, the sea of suck is a whirlpool, its going to take some effort to pull away. The great news is, you absolutely do not have to row this boat alone. In fact, now that the disease has a name and treatment options, you can build an entire team of doctors and support staff to help get you to that new normal.
First, the hard part. It’s time to consider what you are going to have to let go of to get out of here. Some of it may, unfortunately feel like precious cargo. You are going to have to let it go anyway. I’m sorry. Letting go of the things you used to do is one of the most challenging aspects of living well with chronic disease. “Used to be able” has become a jagged bit of metal you will only wound yourself with. No good comes of wallowing in “I used to be able”. Thank it for being there for you when it was and bid it a fond farewell. Something new will fill that void, promise. You may no longer be able to do everything, but what you choose to do will be that much more precious because you have decided it deserves to stay in the boat.
Now, the only thing left to do is chart a course. (That’s pick a direction, for you non-seafaring folk)
What do you want your new normal to look like?
What parts of your old normal do you want to keep?
Which parts are you stuck with?
Make a list, a dream board or some other visual representation of the life you wish to be living. Something you can turn to when the going gets extra rough and you are struggling to remember what you are even trying to do. Now is a good time to consider some of the precious cargo you tossed as well. Is there a version of that you can do? Maybe you had to let go of the job you loved because it was destroying your feet to be on them so much…could you do it part time instead? Is there a way to do what you want in smaller, easier to manage chunks? Can it be adapted to the new you? If you think it can, add it to the wishlist.
Now, step back and take a look at your new normal, not nearly as bleak as you thought it was, is it? Okay, so maybe its only the plan for your new normal. Getting there is of course an entirely different story. Not sure where to start? Check out our Living with Autoimmune Disease section, learn Five Keys to Managing Your Autoimmune condition, or browse our blog articles for more helpful tips and information. Need support? Pop on over to the Chronically Tenacious group on facebook for understanding and community.
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