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For my fellow Spoonies- how and why I’ve decided to disclose

Yeah, I know, what’s a Spoonie, right?

It doesn’t really matter if you are one or not because this is going to be relevant to you either way.

Odds are, someone in your personal or professional life is going through what I’m about to describe. And after you read this they may suddenly make a LOT more sense to you. We’ll come back to that.

First, let’s talk about why we’re here.

It’s mostly because I’ve stared at this page for many many days. All of January, in fact.

I was caught in a loop.

The idea is to repurpose this site to talk about microbusiness owners and the problems we face.

Seemed pretty logical to me:

So I wanted to start talking about microbusiness problems.

But I couldn’t figure out how to talk honestly about what it’s like to run a business with less than five employees without talking honestly about how I run my business with my special set of circumstances.

And I can’t talk about those circumstances without disclosing something very personal.

I’m a Spoonie. And I’ve been in varying levels of denial about it for almost 9 years.

Seriously though, What’s a Spoonie?

A Spoonie is a person with an invisible disability.

We often look fairly normal to people who don’t know we’re disabled- we might even have varying periods of time when we FEEL normal. (Usually for me it’s until I get up in the morning and try to move in any way LOL.)

This can complicate things- when people see us during our seemingly normal moments, they tend to have what they feel are very reasonable expectations of us that aren’t realistic for us.

To further complicate things, we may not realize what we can’t do or how long our lives are changed, or that the changes may be permanent. We’re often as fooled, at least at first, by the fact that we don’t look sick as we are.

Sometimes we refuse to accept the label of disabled entirely, because of how we’ve been trained to see other people who are disabled. Not wanting to see myself as a person who uses the blue handicap sticker services is definitely the driving force beyond my own denial.

In my case one day I was coping fairly well with an illness I didn’t really have to think much about anymore.

Then suddenly I emerged from a drug-induced stupor, 100 pounds heavier, more in debt than I’d ever been in my life and STILL in the same searing pain whose origins baffled my doctors, after a long battle to prove that it really did exist.

It felt like it happened in a day.

In truth I was mentally checked out for about a year, due to the medication I was on after my first ER visit, and it happened at the peak of my career too. I never truly came back from it, and I held out hope for a long time that my life would somehow just go back to the way it was.

The term “spoonie” comes from this fully amazing essay by the astoundingly eloquent Christine Miserandino, founder of But You Don’t Look Sick, my absolute most favorite resource on the internet. It’s called The Spoon Theory.

If you don’t have a few minutes to read it, please watch the video above where the author reads it at a public gathering.

Discovering it and her site absolutely changed my life because she explains what it’s like to have a chronic illness that isn’t perceivable by others.

First, it showed me that I wasn’t alone.

Second, it gave me the language to express the extra layers of decisions I have to add to my life due to chronic pain, without the detour into self-pity, yet still conveying the experience accurately.

Being a spoonie, a person with invisible illnesses (Yes. Plural.) comes with some additional tricky issues besides trying to figure out how to actually DO life, knowing that everything you choose means you can’t choose something else.

The worst one, in my opinion, is whether or not to tell people, and who you should tell if you do. This gets especially complicated for an entrepreneur.

Potential advantages to telling people about your illness

On the one hand, if you disclose what feels like extremely personal information about your health and daily life to people, it explains a lot of things and puts mysterious details about you into context.

It clarifies why you often have to turn down speaking engagements

(Certain times of year, my ability to walk more than 100 steps has to do with what the weather is. During those times of years I can’t plan in advance.)

They’ll know why you always come to the conference a day early and stay a day late.

(Even on a good day, flying first class, my body can barely tolerate air travel. Which is a shame because I simply love to fly. So I need at least half a day for my body to recuperate, and another half day to recharge from the actual trip so I can fly home. It used to take a full day.)

Now people will understand why you are able to show for the meeting you know you have every week but not the one sprung on you at the last minute.

(After a while of being a spoonie, you may be able to estimate, at least part of the year, what the minimum number of activities you can do on a given day.

Then you can plan to “reserve spoons” for regular activities that cost you money when you miss them, usually at the expense of skipping or adjusting some other activity others take for granted, like

But additional unplanned meetings or rescheduling will mean you can’t complete the rest of your work, because you haven’t planned how to “have spoons” left to deal with them.

What is a minor inconvenience for other people often changes your entire schedule for the week.)

In general, people are more patient with you.

They respect your schedule more.

Friends understand that you aren’t blowing them off when you say you’ll be at something and can’t show at the last minute.

Colleagues look out for you and make sure disability considerations for outings or meetings aren’t an afterthought.

If you disclose as a freelancer, entrepreneur or small business owner, customers get that some days you can’t type and excuse the typos that voice recognition might make in a Skype chat.

They’ll understand that you have already lowered your prices as much as you can to compensate for inconveniences like not providing a video download in every conceivable format known to man.

And when it’s time to grow your business beyond a solo practice, there’s less resistance when your duties elevate to the executive level, rather than being the principal consultant or the only freelance worker.

Generally everyone understands that they’re going to get the same quality of products or services – or likely even better because you’ll overcompensate.

But that also means they’ll have to be a little more patient if they absolutely MUST have you and not someone else on the team.

But there’s a Downside Too

So here’s the thing.

With that understanding often also comes many other things. The one that hurts the most? Is pity.

It’s something proud people like myself never want. (Not that being overly proud is something to aspire to- I just know my faults.)

I love it when people truly empathize, and understand the difference between the fact that I have a spinal disorder and nerve problems, and the occasional back strain their home remedy was able to cure.

So I appreciate the intent of people who skip the empathy stage and go right to pity. It’s not as if there’s some textbook that tells people how to react. Some people even see their pity as a proper response to their perception that they are better off than you.

But I don’t see myself as a charity case, nor as someone to be pitied.

I see the chronic illnesses that plague me as my version of the cross everyone is issued to bear. I am blessed with

I could go on and on. Except for the pain, I have a good life.

Possibly because of the pain, I am learning how to be less stressed and more expressive, how to balance my life, how to accept love, when to say YES, how to say NO, how to be more productive and organized, why I need to plan in advance for unexpected downtime… I stop short of calling it a blessing.

However, when it comes down to it, my reaction to the chronic pain has turned into a competitive advantage. It’s always a recession for me, so I know how to do more with less. I have confidence that my marketing techniques work because I am the worst case scenario that they are tested out on.

What’s wrong with pity if people don’t mean any harm?

With pity comes people paying you because they feel for you, instead of the fact that you’re the best at what you do, or that they collect your “work”.

And you’d think someone that relies on how much I made three months ago to fix my problems today wouldn’t care why people would pay me.

But there’s a difference between money not knowing where it comes from and money being exchanged for unsolicited patronage rather than product.

I realize this is splitting hairs. But there will be days when I’m laying in bed, covered in sweat, fully exhausted from my body dealing with the pain it’s in, when I need a place to escape to for a moment.

The place I escape to most often is the satisfaction of being able to find a way to make an honest living.

In knowing, in practical terms, that even with everything I go through, I can run this business.

Which means I can help other people with a few less obstacles than I have, and give hope to people with a few more.

I don’t think there’s anything wrong with patronage programs like Patreon, that’s not what I’m saying. I’m toying with the idea of patronage for some of my writing projects.

And crowd funding and crowd equity are great ideas for raising capital, that I either have or would use.

What I’m saying that when I disclose, I worry that it’s possible, though I’m sure very unlikely, that some people are paying me or buying my products because they want to help me out, not because they think I know what I’m doing.

Even both would be okay.

But even still, it took years- literally years and years for me to become comfortable with the idea that it could be both. And the doubt took that self-consolation away from me. even knowing that in all likelihood it isn’t true- I’ve been published in so many prestigious publications where I have no relationships to the owners or editors at the time.

If people who don’t know me are publishing my tips, and the tips I write can be proven to work by following the how-to steps, if people are retweeting and linking to me, standing behind me at the risk of their own street cred, well then either everyone is as dumb as I am (lol) or we’re all pretty smart.

Everyone gets imposter syndrome at some point, and it’s worse the closer you are to being at the top of your game, your company hierarchy, or your field.

The idea that you’re being pitied increases this.

Sharing your secret also makes it real.

Even though I’ve talked about this several times on one of my sites and in my newsletter, talking about being a Spoonie is absolutely petrifying, every time.

For all of the reasons above and more.

But also because a certain type of hope I used to have, had to die in order for me to share this part of myself.

It may have died years ago.

When I was in middle school, my doctor checked me for scoliosis. I was so certain I didn’t have this scary sounding thing. But I did. Twenty-nine degree curve in my spine.

Thankfully it wasn’t severe enough to need a brace.

And I soon realized that it would not affect my everyday life, beyond standing almost 2 inches shorter than a straight spine would have eventually made me.

But I never forgot that moment of devastation, of going from someone normal to someone with a sickness. I also remember the immense release from realizing that it was okay, that I was going to be okay anyway.

Every time after that, I coped with feeling tainted by a diagnosis – and there were many- by thinking about the moment of relief that would come when it was over.

Over the years that followed, I found out that all sorts of things were wrong with me.

I have an extra bone in my foot and need a special insert in my shoe to correct it.

And asthma. (Which I later found out doesn’t just kind of go away, when I got pneumonia right after I turned 40 and almost died because the asthma symptoms I hadn’t noticed in almost 30 years came back in force.)

And I had upper back problems due to having… just gigantic-porn-star bosoms by the time I got out of college. They just kept growing and I had a reduction to have them fixed, which I’ve regretted ever since. (My body keeps trying to grow them back, but in the wrong place.)

A few more years passed and I was diagnosed with a spinal disorder. As usual, there was a fix. With physical therapy and pain medication that was just slightly stronger than OTC strength, I got to that relief moment again.

But something about this disorder being degenerative was missed by me.

After a while, every few years another problem would crop up, or the pain would suddenly get worse, seemingly without reason.

I’d see a new crop of doctors for second opinions. This merry-go-round lasted for years until 2002, when I was fired from my job when I was on long-term disability, coverage I got from said job.

For years I was not only sick in a way that couldn’t be treated, but also without medical insurance to at least be able to mitigate the pain. At the same time, the business I had started on the side was becoming my main source of income.

But I had to keep the full time job because it gave me the money I needed to pay for the treatment option that kept things from getting worse, a mere shadow of the one that would actually manage the pain.

Of course literally working any moment I was awake is what led to that moment in late 2006 when my health failed so badly that I ended up in the emergency room.

And as is typical with broke and poor people, the ER medical advice was the only one I could afford by that point. They put me on opiates, which didn’t allow me to think clearly, or do much of anything but eat and sleep.

So for about a year, that’s all I did. I was living with a really good friend who did everything else in exchange for what little residual income I had covering the efficiency we lived in, our food and my medicine.

We kept trying new things, the team of doctors I have and myself. We shift tactics and form new strategies for being able to deal with the pain and still keep me able to work.

Eventually there were advances to treating people with degenerative spinal disorder and the nerve damage that can result from not being treated properly.

Eventually, it became an issue of being able to afford treatment rather than being able to find the right one.

People would tell me about new developments, and I’d have to weigh the risk of betting my health on new treatments that might never have been tested on the female physiology, and knowing that my doctors had  a plan that was already working, which allowed me to use my brain during the day to make a living.

Upsetting the delicate balance of meds, physical therapy, and smart “spoon management” had resulted, more than once, in not being able to get back to a balanced state for years.

Because Obamacare now allows me to pay for health insurance and guaranteed term life insurance, when before it was passed I had to pay out of pocket, I can now afford the medication I take at night to relax my muscles and soothe my nerves so I can sleep.

Not even half of my medical costs are covered- the same things that weren’t covered by insurance 14 years ago are still deemed elective today- but it’s still a huge relief.

Eventually the next realization came.

That relief in finding a permanent solution that returns me to some version of normalcy? It may not come.

When a moment filled with that promise comes, I have to hold my breath- it usually doesn’t result in a big progression anymore.

But I still have that dangerous hope.

To clarify that I’m not giving up on LIFE, or even on the idea that things will get better, I’m compelled to try and express what it was like to be so caught up in trying to find THE solution and living for the moment it would come.

Only to later realize that there’s no end.

I got okay with it not because I’m a pessimist. Far from. I have an almost naive belief that things will work out, in general, and life has mostly borne thing out to be true in my personal life.

And it makes it that much harder for me to face the not-that-new truth.

This is my life now, managing pain instead of perpetually imagining and striving for a world where it doesn’t exist.

Being in some ways so much greater than I could ever imagine, but still knowing that I’m nowhere near my potential, being fairly certain that unless there’s a major medical breakthrough?

Means that I had to come to grips with the fact that I may never, ever blossom in what I was supposed to become. I’ll never have the stamina, be able to get enough rest, be in little enough pain, to be who I was on track to becoming.

That version of my life is lost to me. And I’ve given so much of my present life in pursuit of a future that cannot be.

And that’s why I struggled so much with whether to tell people, and which people, and with this blog post, for my disclosure to become public knowledge.

After 9 years of constant pain, I must give up the hope that it’s going to abate, to stop having that particular kind of faith.

You see I need those resources for faith that I’ll get through the day.

That the pain won’t be so bad tomorrow that I’ll wish I wasn’t alive.

That I can find an ongoing solution.

That the people in my life will continue to be understanding and patient.

That I won’t become a burden to them.

Otherwise I live in a type of limbo, not truly living, putting things in my life off until this mystical, impossible future where I’ll be better.

That day may never be coming so I have to live the best life I can now.

That’s why I chose to disclose, to adopt this identity of disabled person that I don’t want.

To learn to want it because it’s not something to hide or being ashamed of– it’s just a fact. I’m just different.

Not just different as a person, in the way being the Othered gender or race is. I’m different from who I believed that I was and I have to learn to see that difference as not lesser, and to find ways to make it true.

So how would you decide whether to disclose?

I don’t know of many resources for the entrepreneur spoonie. I actually don’t see that many resources for people with visible disabilities who are entrepreneurs and trust me, I’ve looked. I am constantly searching.

So when this question came up for me, I tried again to find out if there’s some process that helps you make this decision. There were precious few, so I had to turn to my spoonie friends, most of whom have the perspective of being employed or former employees.

In future days I’ll cobble together those resources and share some of the finer points of the discussions I’ve had. But I’ll share  the two biggest things I learned in the process now:

  1. As usual, there’s a lot to consider that non-spoonies and non-disabled people don’t ever need to think about.
  2. You really must forget about appearances and conventional wisdom and go with what works for you.No one else will be there when you look in the mirror, so the sooner you stop trying to find an option that’s good for everyone and put yourself first, the better.

That’s my journey to here. I’d love to hear yours, especially if you’ve written about it. Maybe I can include that in my next resource list.