If you have a chronic condition or illness you may already know and understand what it feels like to be a professional patient.
Between the physical pain and symptoms and emotional symptoms, the constant doctor appointments in search of that one person knowledgeable enough to help vs refer you to yet someone else and the numerous tests and procedures (not to mention having to keeping track of all of it & all the bills that go with it ) having a chronic condition can become a full-time job and to be honest it’s more exhausting than a good day’s work.
Speaking of work.
You may find yourself needing to cut back on hours at work , go to part time or stop working altogether.
Although this may be a necessity for you and your health, other people don’t always understand why you’re not working.
They may have these crazy misconceptions that you’re now somehow slower , lazy on vacation or lucky not to have to go to work .
Those of us with chronic conditions know, this is so wrong .
And we need to say this for those who don’t understand what we feel or go through. Maybe then people will be less judgmental.
So here is what most people don’t know or understand about not working due to chronic condition or illness.
I personally would much rather be at work.
People look so surprised when I tell them that, some act as if I’m off on some luxurious vacation.
They have no idea that I’m probably home.
So yes, I’d rather be at work because being at work means I’m healthy again.
Logically I know that one good day doesn’t mean I have to ability to hold my full time job again , but its nice to hope I will be back to work someday.
I wish people knew how much I miss my job. I stayed far longer than I should have and probably did more damage to my knee than I needed to, because it was such an important part of my life.
I lost 90 percent of my social life when I left my career and now being at home mostly all day every day is incredibly isolating, not to mention how guilty you feel not doing your part. Every day I hope that I’ll be able to work again someday soon , there are only so many episodes of a tv show a person can watch , I am writing a book and I do take classes.
Being on disability and trying to get the best treatment is a full-time job.
I fill out paperwork constantly new doctors , more questions than answers.
Researching new treatments and the cost only to find great new Like about stem cell injections helping my Osteonecrosis but then being let down seeing that it’s 5-10k and never covered by insurance.
Then the frustration and sadness sets in because I live in America and I paid into Medicare and my share of taxes. And yet the government continues to hold up proven treatment that could help tens of thousands and yet some countries allow the cost of stem cells for their patients.
I also think many people see me and because I wear a little makeup and curl my hair, I think she doesn’t look disabled or ill. They don’t see me on the days I can barely move .
The days I need help going to the store because it gets so cold in the winter here in Ohio I am literally like concrete and in a great deal of pain.
Thank God Giant Eagle grocery store has a new shop for you curbside express.
You will be utilizing it this winter.
I try to be positive even when I’m in pain. I have a disease that is called Osteonecrosis due to trauma to the bone which has left me with a lack of blood supply to the knee.If you don’t have AVN/ON you won’t ever understand my pain.
I also have Spondylolisthesis L5S1 spine issues.
And Osteoarthritis another painful bone condition then add Spondylolisthesis,Hypothyroidism and Rosacea to the mix
Even though I get disability I do feel guilt now and then. I feel like I’m not contributing financially to my marriage and to be honest I miss working and making my own money.
My husband reminds me that he loves me and I would be doing the same for him if it were reversed and he’s right.
Being home all the time can be really lonely. If I had the energy and the physical stamina to be out and work, everyday life would be more fun again.
The isolation from limited human interaction is challenging so I started to take a few classes here or there, attend a seminar for this or that and meet new people. I’m going to be a health coach.
I find things to keep me and my mind busy.
I have a support group for Osteonecrosis.
I find that the spondylolisthesis is the more st painful of the few conditions I have, and the pain from Osteonecrosis is being managed mostly but it has its flares.
Osteoarthritis the stiffness is really indescribable.
But I make my own pain rubs and herbal remedies you can find many in this blog. But more will be in my book.
I became a patient leader and advocate.
I wrote a booklet about the Avascular Necrosis/Osteonecrosis
And I blog and I’m writing a regular ebook and it should be completed by the end of the year.
link to blog ChronicallyGratefulDebla.com
I would love to find a decent work from home job.
Trust me, I would love to hold down a regular job in the optical field again.
No one realizes that a job does more for you than just pay your bills. It is part of what gives you self-esteem.
People always want you to be there for them, but are they ever there for you? Most of the time no.
I’m bored out of my absolute mind. I loved working and until my pain got bad, my job actually took my mind off it for the most part.
So next time you see your friend or family member that’s on disability don’t envy them.
Maybe remember to call them a little more often.
And let’s hope someday the government will help people get their life back by adding stem cell injections to all forums of insurance.
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