Why You Will Never Be Prepared for Life with Chronic Illness

No healthy and fully functioning individual can possibly understand what it means to live a life with chronic illness until they have done it.

When you are thriving and capable, even if you don’t think you are because sometimes you get tired and annoyed, it is nothing compared to living with an exhausting pain that never ends day after day after day.

You think you are safe because you’ve always been able to work hard.

But most of you, like I do, live paycheck to paycheck.

If you’re smart, like I was, you will have a portion of your paycheck go to this and that: 401K retirement, health benefits and savings accounts, employee stock purchases, funding something entrepreneurial, and whatever else people do to “prepare.”

You will have life insurance, short term disability insurance, long term disability insurance, and all sorts of whatever your company might offer and then some if you really think you are preparing.

But you will likely ignore the Aflac commercials because that would mean even more coming out of your paycheck and it’s not like you’re going to ever get that sick anyway.

And then you get sick.

And that sickness won’t leave.

Day after day.

Week after week.

Month after month.

And your FMLA turns into a short term leave until that is expired.

Then you find out that long term disability insurance works extremely hard to ensure they never pay you, so you have to hire a lawyer – meaning that ever step is going to take weeks longer and you are no longer making any money.

Despite your insurance, medical costs are extreme.

And when you no longer work, you still have to pay your premiums.

But they come out of your bank account, not your paycheck, because you don’t have a paycheck.

So although your job might be protected – the one you want to go back to “any day now” although you can’t see an end to what you’re going through – you have no way to live anymore.

You took a hardship loan from your 401K – the most you’re allowed to take unless you quit your job – the one you want to go back to “any day now…” – but since you’ve been taking loans all year to pay for medical, there isn’t much left.

You’ve long since not profited in your personal online business because you simply have nooooooo energy.

So you stop paying any non-vital bills.

You put up a go fund me.

You let your family and friends know what is happening.

You accept their donations and messages of love gracefully.

And you pray.

And you have faith.

And you take care of yourself.

And you do your best.

And you fight with the powers that be to give you the support you have earned – REALIZE YOU HAVE EARNED IT.

And then days turn into years, and you begin to realize that you need to adjust to the slow flow of your life or you are going to simply drop dead from pain and frustration.

So you do.

You create a plan.

You get a diagnosis, you work out a treatment, you adjust to your pain, the new medications and lifestyle.

You do what YOU NEED TO DO for your health – damn the suggestions.

And now you aren’t great, but you are fine.

And unless you’ve been here, you really don’t know so you can’t possibly be prepared.

What’s your story?

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