Hiding in the Open

painted woman hiding faceI recently tried a GofundMe campaign and the results were as expected – not very good considering what I am trying to fund.

The campaign and the reason for it are not obvious to my friends or relatives. Why? Because I have simply not been open about my physical struggles. I have a genetic condition that wasn’t diagnosed til age 55. I’ve spent most of my life just getting through the challenges without acknowledgement from the medical community or from most folks I know.

You get used to not talking about health problems when folks either don’t want to hear it or if they don’t believe you. Medical PTSD is real and many with lifelong chronic issues know exactly what I’m referring to.

But this story is a little different. It’s about my “career” and the fact that we’ve managed to look like we are succeeding. I’ve certainly had trouble with finding and keeping jobs. Many times I took jobs I was overqualified for just to put food on the table. Many times I lost jobs because I have a firm sense of right and wrong and am not good at keeping my mouth shut. And then there were jobs that I simply couldn’t manage on a long-term basis because of my inability to work the hours and conditions they would expect.

20 years ago, my last stab at self-employment stuck. I lost a job the same day we got a contract on our house. I decided with that influx of profit I would work on learning web design so that I would be free of employers. It was not easy but eventually I was able to cobble together an income of sorts.

Much of our income in Georgia was through flipping houses – the ones we were living in. We looked like we were doing well as I am good at renovating and decorating.

At the start of the recession in 2008 I moved 700 miles during the recession to take a job which, once again, I was not able to keep. My physical problems along with my mouth just killed that off quickly. I was clear (and diagnosed) about my issues but that was no better than trying to just muddle through. So the lesson learned was that I needed to hide the physical issues.

Social media only reinforced this. One usually does not post and tweet about the bad personal stuff. Not while everyone else is either ranting about politics or bragging about their vacations or wonderful grandkids.

So I just kept putting up a front, ranting about politics and liking the dog pictures.

I did start mentioning Ehlers-Danlos and posting during May of each year – the official EDS month.

I became more and more isolated as it was extremely hard to get around and participate. I did have fun in the tech community in Charlottesville but most I met were 20 or more years younger and healthy. It just got harder and harder. Finally, I ended up with a series of surgeries that took me out of circulation.

Out of sight, out of mind.

By that time I was immersed in Facebook as my social life but also was marketing my business while hoping it would all pass. I absolutely wanted to avoid prospective clients knowing I had issues. I did talk to a few clients about it and some have been aware but were loyal and grateful for any work I did for them. I had a studio portrait done for my book blurb. I looked good!

Then we moved. To Maine. To genealogical heaven. I had been visiting several times a year, getting to know folks and distant family, researching and falling in love with Maine more each time I visited. It was time for new beginnings – again. I hope to jump start my business and make new friends.

Within the year of my last surgery, we left Virginia behind and settled in Maine (spending every penny we had to get here). I was definitely not in good shape due to undiagnosed issues but had fun attending events I had been longing for so long to immerse myself in. No one really knew me and I was getting the usual comments of “But you look good. You don’t look sick” when anything arose.

Then the pandemic hit. I was no longer alone in isolation. There were benefits to that. Sigh.

By the time masks were ripped off (not mine!), I had been finally diagnosed with another condition. Armed with my new realization that my increasing muscle weakness was possibly only going to get worse, I decided to get a wheelchair. After years of not being able to get around well, including 2 years of using crutches, I finally realized that life doesn’t have to be about getting by. I wanted to get out and participate in life.

We have missed so much since we have not been able to afford great health care and this was a prime example. Medicare will not pay for a wheelchair until one cannot walk inside the house.  Even if I qualified on that basis, the type of wheelchair I chose would still not qualify.

Delia & dog in wheelchairSo I ordered a folding power chair that can fit into the backseat of the car. YAY!

Then. OMG, I need money! Thus the gofundme.

Then the disappointment. My besties are like me, not moneyed and frequently also disabled. I’ve had a hard time of getting shares on Facebook and only two on twitter have even noticed. My family is conspicuously absent (no surprise there, but still). I simply have little reach. My story is not clear and oh yes, those with healthy bodies tend to ignore in case one was contagious.

I stopped trying to gain money this way. I’m barely halfway to the chair and we have many thousand dollars more needs. My post announcing this went something like this:

It’s just sad that folks who need the most help and support simply have no way to get that. It’s not just me. I see these stories all the time. It’s incredibly sad and a failure of our society.  

I had not been public about my struggles and there has been so much more than you know. Now I’m wondering if putting on a brave face, of trying to avoid these things has hurt me in the end.

Please reach out to folks. We don’t all have supportive families or friends. We don’t all have financial resources. And we have health problems, sometimes rare conditions, that prevent us from having all the above through no fault of our own.

I’m not asking you for money any longer. I’m asking you to either repost this and to reach out to those “less fortunate”. I think you will be surprised to find how many folks like that there are among your friends.

We hide in the open.

Please take a few minutes to try to imagine the issues. I know it’s hard. I have been astonished to find out what disability is like even though my husband has been disabled for years. I’ve been flabbergasted to find out what Medicare doesn’t pay for. I am extremely disturbed at how inaccessible my house is. The recommended 32″ door width certainly is only a minimum. Add in turns and one needs 48″ doors! Yes, we have a wheelchair ramp but, dang, the needs don’t stop as it wasn’t actually built properly. (I push my chair up and down it). The over-the-counter items fill my amazon orders. Our bathrooms are truly unsafe.

I no longer hide in the open. Is it too late? I’m definitely tired of it all. I hate baring my soul about this type of issue – it’s all about money now. Few realize how little we’ve managed to live on, now how little our retirement provides. I don’t want to announce we’re poor but we are. We get help with our drugs but are not miserably poor enough for more. And we have our pride. We’ve managed til now. Usually by simply doing without. I refuse to do without any longer. I refuse to be confined to my house. I refuse to withdraw from life.

So I started begging for money. Sigh.

Again:

Please reach out to folks. We don’t all have supportive families or friends. We don’t all have financial resources. And we have health problems, sometimes rare conditions, that prevent us from having all the above through no fault of our own.

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