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.spoonie-word-cloudx325

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:

  • People come to me for advice on this subject almost every day.
  • Some of those things might benefit other people.
  • Most of those things have nothing to do with web visibility. And-
  • I already have a site that talks about that.

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.

My insomnia has been awful lately, so I drew my wish in my #artjournal. I think she's a sleep faerie or something. Visit me please! I want to sleep! #chronicallyawesomecreates #mixedmedia #gelliprint #drawing #illustration #spoonie #insomnia #journalgirlIf 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.

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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

  • cooking your own lunch instead of buying it,
  • or working from bed instead of going to the office or sitting at a desk.

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

  • a loving extended family,
  • some truly great friends,
  • freedom in my schedule and lifestyle,
  • an inherited intelligence,
  • a gift for what I do,
  • a series of rich and beautiful romances…

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?

Torn & Cut One Dollar Note Floating Away in Small $ PiecesWith 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.

17 Replies to “For my fellow Spoonies- how and why I’ve decided to disclose”

  1. Thank you for your clarity of mind and depth. Your openness and realization lead me to some reflection now. I need to be with this a little more. I love you so.

    1. Love you too Jill. Thanks for reading this. I know you already have a huge insight into what life has been like for me, coming to terms with all of this. So I appreciate you indulging 3600 more words about it LOL.

  2. This is insightful and inspiring. Thank you for writing this and baring your soul. I also think this applies to people with hidden mental illnesses. Even with medication and therapy, mental illness must still be managed, often for a lifetime. Sometimes people are more functional and can work very well and be organized, etc. But there are other times when thinking becomes clouded, the body slows down and the level of functioning drops for a time. For many professionals, entrepreneurship is the only option. So many of the issues you mentioned are the same. The major difference is that mental illness holds more of a negative stigma (still) than physical illnesses (generally speaking). Thank you again for sharing.

    1. Welcome Becky,

      You have no idea how excited I am to get a new comment about this article. Thank you so much for commenting. I’ve had my struggles with depression extending back before the pain but there’s just such a stigma about it that I hardly ever refer to it.

      A very dear friend of mine from college has been extremely courageous about sharing her own struggle with more than one mental illness. It’s so much braver what you and she do than what I share, I think.

      Most people can, in some way, wrap their head around chronic pain. A minority of them may still have issues with you, or think you’re being lazy instead of truthful, pity instead of empathize, or, especially in the case of family members, refuse to acknowledge your pain when it’s not convenient for them BUT they still, in some way, confront the issue in the realm of reality.

      But to disclose mental illness? There’s such a lot of misinformation on everything from thinking a positive attitude combats depression all the way down to society’s judgements about suicidal thoughts, bi-polar disorder, the criminalization of insanity and everything that leads up to it?

      I don’t know if I could ever find that strength. So the admiration is mutual, friend. Hope to see you back here again and that I hear your story too.

  3. Teenz, I knew a little of this, but not your while story. I told you this early on after we met, and I’ll say it again, you’re one of the most powerful writers I know.

    You’re also one of the strongest people I know. It’s really, really hard to accept any “label,” especially one you don’t want. There is nothing that says it is the label you’ll be stuck with for the rest of your life, though. And you are empowering countless others by sharing your story.

    Also, I’m fairly certain that no one hires you out of pity. They hire you because you kick butt. Plain and simple.

    I miss seeing and talking to you. Please let me know when we can get together, and I’ll organize whatever needs to be organized, so that you don’t have to. Deal?

    1. Hey Shonali,

      You were one of the people I thought of when I wrote about having to bail out on plans at the last minute. It was great to see you again when Sally was in town and I’d love to spend time with you again.

      Thank you for your thoughts about my writing and why people hire me. I’m sure you’re right but it really does mess with my head sometimes. I realized everyone who positions themselves as an experienced or expert service provider or is in a position of authority goes through their issues with imposter syndrome. But because my condition makes me feel less-than, it’s that much easier to fall into this mental trap.

      When I wrote that, I was remembering times when I wrote a sales letter in the moment, or the Indiegogo campaign I had for my surgery where people ordered one of my products or services and never collected.

      I appreciated it but I also agonized over it, in those dark moments when I was recovering from last year’s surgeries and couldn’t do much more than hobble out to the rest room or come to my bedroom door for the food someone brought me.

      As far as empowering others, I hope this will be the first of many things I can share to make someone else’s life a little easier.

  4. Well written essay on the topic of pain diagnosis and pain management. You capture the “quest for return to normal” so well, because that is what everyone wants, but this is not possible for so many. The topic of invisible disabilities has come up before, but your disclosure of how it makes you feel is so informative and helpful.

    Thanks for sharing your thoughts.

    My mother suffered for 50 years with severe pain from a very obvious curvature of the spine. Although her gate and standing position were clearly not normal, most people did not see it or understand the pain behind it. You’ve given me a glimpse into what it must have been like for her.

    I also was diagnosed with scoliosis at a young age (wore a brace in my early teens), but until recently (after several decades) did not suffer any pain. The last few months have changed that, and I am now taking this all in, and meeting with the professionals. On a quest for normal….

    1. Hi Marti,

      I’m so sorry to hear about your pain and your mother’s journey. 50 years is a long marriage to pain.

      A friend has an inside joke with me about how sad we are to hear of a new member of the chronic pain club, but how happy we are to be able to have another person we can support, and other person who understands. If there’s anything I can do to be of support, please let me know.

      Thanks so much for your compliments on my writing. I can usually write something this length and find the art within 2-3 hours. This one took an entire week. But it was worth it.

      I don’t love the pain but sometimes it gives me a unique appreciation for having finished something.

  5. Very brave, Tinu. I knew you are strong and I knew you deal with a lot and am glad to know more. Thank you. I hate that you are in this much pain. I can relate, on a much smaller scale…have had a lot of pain for the past several months. (I also did not know about Spoonies but plan to read the book.) I can imagine managing the kind of pain you have, and the kind of strength it takes. I very much know that feeling of waiting for the moment of relief when it is all figured out – and being told or just knowing it may not come. My heart is with you every step of the way. Much love to you.

    1. Thanks Sue. I wonder if it’s brave that I’m sharing now or cowardly that I hadn’t shared before. Not from the perspective of a lack of confidence. Just seeing it in context for my self and a lot of other people. I can’t imagine how people with fewer resources are navigating the world this way.

      I remember your struggle with your knee (medicated right now so please excuse my brain fog if it was another body part). I try not to think of it in terms of who has it worse because no one wins that battle, even if someone does by technicality- you know what I mean?

      The bottom line is, we should all be able to exercise all the health care options that exist when it comes to overcoming pain especially. In other countries these options exist, all the way up to preventative measures. And it’s a pity we haven’t found affordable ways to mitigate the financial damages.

  6. My beautiful friend, this thoughtful essay is a wonderful read. I hadn’t known about “Spoonies” but am glad to.

    Thank you for sharing your story and educating us about a reality many of us hadn’t imagined. Xoxo #whatnot

    1. Thanks Allen. Everyone should know about Spoonies, and all people with disabilities. The experiences I’ve had related to this have made me think that helping to raise awareness for both groups must be part of why I’m on this journey.

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