Invisible Disability

Truly one of the hardest disabilities is one that is invisible. On the outside, we look, ‘fine.’ But on the inside, we’re anything but. It shouldn’t make a difference but unfortunately in our society, it very much does. People judge and that judgement includes doctors, ER staff, family and friends. They don’t see the pain. They don’t see the fatigue. They don’t see the disorientation and dizziness. We look….. normal.

I’ve sadly fantasized about missing a limb in my moments of frustration thinking if maybe they actually SAW a disability, then they would finally understand or treat me with respect and not make assumptions or judge wrongly. It’s also brought a deeper insight and understanding into those who cut. Not that I’d ever cut but I can see it as a way to show the world the pain and turmoil hidden inside when the world ignores your pleas and minimizes your feelings.

Our world is not kind to the disabled. I have a family member who once told me during a migraine that she could ‘finally see’ that I do suffer… That she needed to ‘SEE’ my pain to believe me. Most of us hide our pain. We don’t want to walk funny, look different, or spend our day moaning and making noises for the world to hear. It’s not like acute pain. We learn to adjust and push through it but that does not mean it isn’t disabling or not extreme. We just had to adapt regardless. No one can see the heavy weighted invisible sandbags clinging to each limb. I can describe it all day long but truly unless one experiences it, they wouldn’t understand. It’s extremely difficult to function when gravity acts differently with your body which is another way I like to describe it.

It’s even worse having dysautonomia. Being upright too long triggering migraines, disorientation, pain, shakiness, palpitations and tachycardia. My best position is a slightly reclined position with head support. My muscles simply don’t want to hold my head very well. It kills me knowing one of my children suffer this same thing. My muscles have atrophied along my spine, my butt, and my thighs. It’s hard to come back from that. No matter how hard I try, I won’t build endurance. I can spend all summer lifting a small weight and it will have no improvement in my muscles and cause the same pain and fatigue every time. In fact, it will cause my muscles to progress. What kind of disease is that!?! The catch-22 when you need exercise to improve your muscle function but the disease that causes exercise to worsen it instead. I feel for my children.

Then there’s the Elhers-Danlos. That alone is bad enough but alone is not what Ehlers-danlos does. EDS is systemic and likes to collect it’s own set of other disabilities to join the party. My labs are some of the most bizarre labs I’ve seen. Even the doctors are baffled by them. Truly a Zebra with no desire to be one but that’s my lot in life. I’m fortunate to have a husband who has been by my side over 22 years, supporting me and being my biggest advocate.

No one chooses to be disabled. We need better programs, improvement in insurance and services for those of us who find our lives altered by these diseases. Currently, most policies are set up for those with visible disabilities, again, discriminating against those who remain invisible. Then there’s the issue of government involvement in our healthcare, making medical decisions and guidelines without a license to practice medicine or policies on medicine made by people who don’t even represent the population the medications affect. Patients being denied care, needed medications, correct dosages, having to choose between treating one thing or the other instead of treating them completely. Where is our choice over our own bodies and what we want when we’re the ones having to suffer? Where is the common sense? I’d rather sign a release of liability and take what I need at the dose I need to allow me to fully function than to be undertreated over some unfounded fear that that might cause addiction or maybe even death. Yet the dosages are so low as to not being a realistic concern. But shouldn’t that be my decision to make? After all, I am the one living this life. Quality over quantity.

Yesterday I read an article about a 20 year old male suffering from a disease they can’t figure out that causes him disabling pain. Rather than treat him with pain meds enough to function and have some quality of life, they are offering him euthanasia instead. This is Canada. Euthanize rather than treat. Having a child who’s had those same desires, as well as suffering myself, I can empathize and understand his position but what I can’t understand is how government would rather allow this much suffering rather than allow someone the quality of life they need with medications that DO work or allow the option of euthenasia but not the option of good quality care. This is our world. Where is the outrage about this?

So much outrage over woman’s right to abort but near silence over the abuse of pain patients and the disabled. It truly is a world where people only care if it affects them personally. They’ll turn a blind eye if it doesn’t. Maybe had they fought for our rights when we were seeking help and advocacy warning about the atrocities going on in our country, things wouldn’t be the way they are now. But instead, they were filled with the propaganda by our media, the fear mongering over opioids as if it’s the real cause of our countries overdose crisis and not the illicit street drugs coming off the streets. Yet, the real studies are readily available, the proof is there but the world is blind to it.

I could write an entire book on patient experiences that would boil the blood of anyone who read it if they knew what’s been going on to so many of us in pain. Even those with cancer, crippling disease, major surgeries, so many affected by these biased policies that cause patient harm. Smell some lavender oil after that bowel removal but no opioids for you. When government can offer incentives for hospitals to follow their guidelines and protocols that don’t take patient individuality in account but a blanket policy then we have a real problem. Incentives need to be removed and government needs to get out of medicine and our healthcare. They also need to remove the hypocrisy in regards to cannabis, it’s status under a substance that has NO medical benefit and yet legalized in so many states for the medicinal benefit it actually provides. When it takes legislation and decades to do what’s right, maybe we need to look at our system and fix what’s broken. It shouldn’t be that hard. We’ve lost common sense in our country.

I’m tired. Just truly tired.

The Edge of Darkness

Living day to day, I struggle just to breath.

Trying to keep my calm. Praying for a long reprieve.

Balancing on the edge, each moment that I take.

Stomping down moments of regret, trying to avoid another mistake.

End it now or keep pressing on, decisions never far from thought.

Wishing for a peaceful existence, no demands or responsibilities fought.

For my shattered mind, so fragile, worn thin, how did I get to this place?

Always so strong, so determined, now weakness, an utter disgrace.

Body broken, weighed down, crippled in chronic pain.

Pushing myself, the frustration, no endurance, pushed in vain.

Questioning my existence, anger, fear, and doubt.

Stuck in a hole with no exit, surrounded by a withering drought.

The end so close, I feel it near. Do I reach out and grasp it’s hand?

Even the thought of that decision is simply too heavy a demand.

I think of their faces, my heart and soul, the pain that would never heal.

Do I put that burden upon them? A pain I never want them to feel.

But is my life worth keeping? A weight dragging everyone down.

Unable to care for myself, all the tasks piling up and I drown.

No one here to pass the torch to, everyone looking for me to depend on.

How can they even think it’s realistic, blinded by who I once was, she’s gone.

My hubby, exhausted, I see the burn out taking it’s toll.

He refuses to acknowledge, yet it seeps from his very soul.

My heart breaking in a million pieces, I feel helpless to my core.

Dreaming of winning the lottery, hire help, hire so much more.

Life’s journey, roads traveled, didn’t turn out as I’d expect.

How much damage one’s health can do, lacking services and respect.

No one chooses to be ill, dreams shattered and washed away.

Passions abandoned and unfinished, life in a state of decay.

Never quite enough to qualify for getting my needs met.

Like a dangled carrot above me, while being judged, but don’t fret.

Is it worth hanging on, listening to others scorn?

Sitting in their high castles, while my soul does nothing but mourn?

Cut them out from my existence, not worth the extra stress.

Neither willing to lend a hand, while I continue to regress.

Sitting in judgement seats while my body rots away.

And you wonder why I cut you out, a game I simply won’t play.

Every little bit of stress adds another layer deep.

Breaking down my body even faster while I weep.

My life now down to few, the only ones that matter.

Do I continue to hold on, do I give in to the madhatter?

Like a prophesy once told, left a simple talking head.

But even talking exhausts me, maybe better off if dead.

Dianne MacKay 6/24/2022

Missing The Whole Picture…Words and Facts

When I was a kid growing up, in school we were taught to gather all of the information before forming an opinion. Gather the facts. What do we know? What information is missing? Today’s world seems to be missing this very essential step in the process before rushing to judgement and adding their own 2 cents. I truly believe the internet, social media and our own media has amplified this problem.

We used to have investigational journalism. I miss those days. Now it feels like everything is a big joke, entertainment takes priority, truth is hidden and lies are glorified. This seems to have a ripple effect touching the lives of everyone in one way or another as those around us begin taking up those same bad traits and jumping into the fray forming opinions as if fact and making accusations as if truth. What a sad world we live in.

Maybe attending college for conflict resolution has given me an edge on being aware of two sides to every situation. How our experiences shape our views and how group think can alter the atmosphere. Taking our time to reach conclusions and not rushing to judgement while keeping a rational mind is paramount. But too many can twist facts (I honestly think the definition of ‘facts’ has changed like a few other definitions have of late) to fit their own narrative, what they choose to believe and what helps fuel their own desire for drama as their only way to lash out at the world. Maybe looking inward with some deep reflection and honesty can help open the eyes to people’s own hypocrisy. Maybe not.

Cause deep down, there’s a lot of disgruntled people out there and some simply need a target. A target to take their own frustrations, fears and insecurities out on. Rather than being a rational mind, they’ve allowed fear to corrupt them and while our societal media highlights the drama, rash judgements and harsh criticisms that only seem to want to keep fueling the fire and widening the divide which digs itself deeper into the mind of the people who seemingly look for the easy target, the scapegoat, to latch onto and vent their own anger and insecurities at. They failed to gather the facts.

Another thing I’ve learned in life is to never use the ego when involved in an argument or disagreement with another. This is another thing that has seemingly gotten worse over time. The name calling, the harsh and ugly words against another. Do you honestly think that will do you any favors? If you’ve stooped to that level, you’ve lost the argument. You can catch more flies with honey than you can with vinegar. Calling someone a vulgar or derogatory name isn’t going to win them over and certainly doesn’t help the situation. It only highlights the deep seated anger, insecurity and aggression bubbling under the surface.

Some people are born to be a part of the drama. Some only come out when the stress gets too much. Others just want to simply live in peace watching the events unfold around them, shaking their heads knowing our world is just going up in smoke. Gather the facts people. Don’t be so quick to judge. And be absolutely sure of your information before rushing to that judgement especially if you feel the need to jump in the fray and blast a person on social media. Words spoken can’t be taken back. Can people change? Absolutely but people aren’t quick to forget as social media has shown us. These days a comment made 10 years ago can come back and bite you. Doesn’t matter the relevancy, the situation, anything that can fuel the fire and add some drama can be thrown up at you decades down the road. Words matter.

They use to say, ‘Sticks and stones may break my bones but words will never hurt me.’ That’s a lie. Words do hurt and they do matter. I don’t agree with going back 10 years just to use something against someone. That’s not who I am nor think it’s acceptable. As I said, people change. But words in the here and now, they matter. They create deep divides and shut down the walls and lose whatever trust may have been available. Words can hurt more than sticks and stones. They can divide a family up and widen the gap and close doors that wouldn’t have otherwise. So think carefully before you use your words. Gather the facts. Don’t rush to judgement. And don’t blast someone on social media with accusations that can’t be taken back.