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.