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

Stages of Grief… A Rare Disease

After all these years.. So many years.. I’ve fought to be believed. I’ve fought for answers to what I believe is slowly killing me. Always blamed on my conditions that are not progressive, that don’t cause the symptoms that were bothering me most. Always told my blood looks good and there was nothing wrong with me. But my blood doesn’t always look good and yet they say otherwise.

I’ve been told I’m just overly anxious. I’ve been told I’m simply focusing on it too much and if I distract myself, I’ll feel better. I’ve been told it’s all in my head. Not even just by medical professionals, the people we’re supposed to trust and turn to for guidance, diagnoses, and direction but also by family of all people who should have my back the most. Being called a hypochondriac, always thinking I’m dying or I have this or that. Being told I’m faking. Being told I’m scamming the system. Having others talk about me behind my back instead of coming together to support and help me. That’s very damaging.

Now imagine going through that for so many years. So many years the damage that builds up inside. PTSD from seeking help and being cast aside. Questioning your own sanity and your own self asking if it’s truly possible I was simply imagining the torment my body is going through. You can not imagine the hell my mind was put through. You simply can not imagine… unless you too have been through it.

And then one day, 22 years later. #22 for those in the know. TWENTY TWO YEARS later I get some answers. It’s not in my head. It’s not fake. It’s not anxiety, somatic symptom disorder, being overly anxious, a hypochondriac, a scammer of the system, or attention seeker. I have a REAL DISEASE. Not only a real disease but a super rare disease. About 1 in 200,000 people. Not only a rare disease but a debilitating disease. Not only a debilitating disease but a fatal disease. I have a REAL disease. And it pains me even to say that knowing many suffer from fibro and ME/CFS just like I do but we are not treated like patients with a real disease or taken seriously when we’re falling apart and suffering in so much pain and disability. They are real too, likely a collection to explain a disease simply being underdiagnosed and ignored when basic labs are normal because doctors don’t know how to look beyond the narrow box in which they seek to fit everyone.

I find myself going through the stages of grief. You’d think I’d feel elated. Vindicated, justice at last but oddly enough, I find myself soaked in grief, in shock, anger and bitterness over all the time wasted. All the time being put through hell, being bashed, emotionally abused, and mistreated and allowed to progress so badly there is no coming back from this. My body is damaged. Had they simply listened when I first complained. Had they only helped me when I told them that exertion is making me more ill, that I needed help! Both medically and at home as I am dying and I feel it in every cell of my body but no help came. Because they didn’t believe. On top of that insurance and the VA rules are so contradictory and on paper offer so much of what people need but they dangle it on a string above our heads but simply out of reach of us.

And if I do ever finally get granted the funds I need to pay for the help I’ve been asking for, do you really think I’d turn around and pay those who’ve denied me the help I’ve been asking for all this time but never truly given it? Only to help when paid? I rather hire a stranger off the street. The pain is so deep. How do I ever recover from that? I want to look each person in the eye who ever denied me, gaslighted me, and blamed mental health and tell them how truly ignorant they are, how truly wrong they were. They are a danger to others if they ever think it’s ok to allow someone to suffer as much as I have suffered and not do their jobs and help me.

I’m still bouncing between shock, grief, and anger while I process the news I’ve been given. To validate the symptoms I’ve been battling for so long, the progression, the pain… I’ve been broken down mentally by the exhaustion of it all, to the point that simple stress causes paralysis and pain. Apparently, that’s a real thing with not only my disease but other diseases that affect the brain as well. So if I tell you that I don’t need the stress in my life, I don’t want to argue or waste my time on the stupid shit and you choose to continue it, you obviously do not care for my health and wellbeing. You are part of the problem. You are part of the progression of my disease.

If you truly cared, don’t you think you’d ask me questions about what I’m dealing with? Wouldn’t you want to know more about the disease I’ve been finally diagnosed with after twenty two years? Wouldn’t you be shocked with me that my disease can be fatal and my numbers cut short? Where is your compassion and concern? How about the fear of whether I’ve passed this down to my own children?! Something that literally paralyzes me and keeps me up at night as I wait this slow snails pace of a medical system to get my children tested so we know what our future holds. I’d take it all from them if I could.

How can I not feel the depths of despair and depression with everything I’m going through right now? That’s a tough pill for anyone to swallow. All I feel is loss. I don’t want to swallow this pill. I’m tired of pills. I’m just very tired.

The Years Go By… Rare Disease

                                        The Years Go By…..

I see a doctor,

I’m in pain

You look fine

Let’s try again

They run some tests

The labs look good

You’re in perfect health

But I don’t feel as I should

Can we look some more?

Somethings not right.

It’s probably just anxiety.

And thus begins my fight.

My mind is fine

It’s my body that’s broke

You made up your mind

Before I even spoke

There’s plenty of tests

That have never been run

You ran basic labs

Assumed nothing else can be done

So off I’m sent

Specialists galore

Once again basic labs

Not much to explore

You’ve checked off the norm

But I don’t fit in a box

See mental health

You’ll heal with those talks

Mental health said see Neuro

I’ve been there before

Pushed back in the box

Then shoved out the door

No one will listen

Somethings not right

It’s slowly progressive

I’m losing this fight

You’ve had ‘extensive tests’

And which would that be?

Only basic panels

No in-depth testing for me.

There’s mito, myopathy

And dystrophy

You don’t present like the norm

What norm? Can’t you see?

Adult onset is different

It’s misunderstood

You assume we should fit

We would if we could.

The literature’s outdated

The training is slim

No time to read studies

Let’s just blame them.

The kids showing signs

The same as me

It’s all in my head?

How can that be?

There are so many tests

Yet to be done

I’ve asked many times

You think this is fun?

This is my life

It’s falling apart

You see mere moments

But not from the start.

I use to keep my house

Everything in order

Now it’s collecting dust

Feeling like a hoarder

I had meals on the table

The neighborhood mom

Now I struggle to stay upright

I’m losing my calm

I don’t build endurance

My muscles fatigue quick

Weakness is present

My body feels sick

My kidneys leak protein

My gut won’t absorb fats

Tachycardia is present

Low blood pressure my stats.

My stomach shows bleeding

Esophagus gets stuck

Small bowels with rare findings

Now sort through this muck!

I want answers for my health

I should have that right

This is the life that I live

This should not be a fight

Appointments take months

Just to be seen

Some specialist’s years out

The wait in between

The process is slow

It does no good

Healthcare’s messed up

It’s not as it should

Where are the centers?

For a comprehensive exam

With doctors of all specialties

Rare disorders their plan

Don’t judge a book by its cover

They say

Yet you’re doing just that

And I’m left to pay

I’m angry, I’m hurting

My life up in smoke

Disabled and broken

Pulled down by this yoke

I feel the progression

Slowly take hold

My limbs will lock up

If I’m feeling cold

Repetition paralysis

Also exists

There’s testing for that

I will insist!

Scoliosis, kyphosis,

A pelvic tilt

Can’t support my posture

My body will wilt.

Migraines, brain lesions

Double vision as well

This is my nightmare

I’m living in hell

Early onset cataracs

Bad vision at night

Super dry eyes

Surgery I might

Scaring in the lungs

Mitral valve prolapse

Shakey jelly legs

Ready to collapse

Chronic high cholesterol

Yet no weight on my frame

Plaque calcified in my arteries

That’s for the old, they claim

Bone inflammation,

Stress reactions they say

3 years in a wheelchair

For that I did pay.

One step from a fracture

Bilateral too

Explain that to me!

What should I do?

This is not normal

It all adds up

Where are the answers?

It’s filled my cup!

Hypermobile as well

Let me show you my tricks

My kid’s knee will dislocate

It’s not a simple fix

My list is long,

Some you’ve never heard

Knowledge is lacking

Training has not occurred

Myalgic encephalomyelitis

Can you pronounce that?

Dysautonomia as well

Your experience falls flat.

Epstein barr reactivated

My immune system shot

Low C3, still exploring

But Lupus it’s NOT.

Abnormal gait

My skeleton misaligned

Some bone abnormalities

Organ differences you’ll find

Occasional burst veins

Petechial spots on my skin

Inflammatory bowel disease

I just can’t win!

Numb leg for a year

Sunburn feel on my back

Stabbing toe pain

I wish that one, I lacked!

Bowel spasms that drop me

My bladder too

My esophagus joins that list

What do I do?

Fasciculations and spacisity

Muscle spasms and pain

Internal tremors for years

Yet they can’t explain?!

Hiatal hernia repair

My gallbladder out

Multiple cysts, necrotic appendix

What’s next? I shout

Let’s see, there’s the uterus, that’s gone,

rectocele times two

Interstitial cystitis,

Neurogenic too

Anemia, iron deficiency

Low sodium, low potassium

Low ALP, low CK, low BUN,

No answers, I’ve asked for them!

Low anion gap, low ferritin,

Low vitamin D

My numbers look beautiful

Nothing to see.

My labs were all normal

My CT too

Yet full of IBD

And you never knew

I told you I’m a zebra

I don’t present in the norm

No inflammation in my blood

Based on basic panels, your form.

There are other lab markers that exists

But you’re not in the know

Don’t blame my mind for your ignorance

healthcare is a shit show.

Send me to specialists

Who know rare disease

22 years I’ve been waiting

I’m really displeased

Takes 15 years on average

For those like me

To finally get answers

It’s a simple plea

Our system is broken

Too much time lost on blame

Their ignorance is speaking

When they play their basic game.

You don’t fit in their box

It must be your mind

Without truly looking

There’s nothing to find

How do you fight a system

When your crippled and done

The fatigue is daunting

Sensory overload won

Words coming out backwards

Your memory lacking

Assisted devices for everything

Once sharp now cracking

Brain fog is strong,

Simple things now hard

Held down by this body

My freedom is barred.

If not for me,

Then for my kids sake

What is going on?

This is not fake!

She’s taking advantage of the system

Hypochondria is strong!

She just wants pain meds

How badly they’re wrong.

Somatic symptom disorder

You’re thinking on it too much

It affects me nearly every moment

I’m pained by simple touch!

She’s simply an anxious mind

But it’s only here I get spun

All the gaslighting, accusations

PTSD is no fun!

I’ve been accused me of much

Your judgements off base

I’d love to see your response

If you suffered what I face!

But wait! There’s more! Should I go on?

Nystagmus, ataxia,

vertigo too

Thank God that’s less frequent.

Oh, emphysema! But that’s on you!

Endometriosis, Menorrhagia,

Bilateral labral tears

Gastritis, Bile duct dilation,

Severe abdominal pain in flares

Constant pain in my hips

Endless in my butt and thighs

Hurts to stand, to walk, or sit

What causes this pain to arise?

It’s too rare to exist,

The doctor does boast!

No, it’s not as rare as you think,

Just simply rarely diagnosed

                                                                                Dianne MacKay 4/2/22

Political Medicine

I’ve always known we had issues with our medical system. Over specialization (lacking the ability to see the whole picture), lack up updating current data and going off of antiquated literature, inability to think ‘outside the box’ for those of us that don’t fit in them, and lack of advocacy for those suffering chronic conditions. Bias still exists in the medical field. Patients have had to advocate for themselves, educate their own doctors on conditions misunderstood or conditions most medical professionals are simply unaware of.

But I never expected that we would simply change our medical system to political medicine. Never did I expect that government, big corporations, and a portion of society would accept this change at the expense of the vulnerable and those fighting for body autonomy. Never did I expect so many to go along with it, unquestioned and spew so much hate towards those that know a medical system of ‘the greater good’ would be harmful to apply across the board and be harmful to those of us who are vulnerable.

I’m thankful there are still some good doctors and medical professionals who are standing up for body autonomy as we are not a one size fits all society. It is not possible to be without causing harm to a portion of the population.

Where do we draw the line?  We fight hard enough to be heard by uneducated doctors and society who have no idea of the health conditions that exists among us who have no understanding of the day to day of what we go through and we expect the government and big corporations and society in general can suddenly make those decisions in our best interest? And to stand up for our own bodies, health, and situations is now suddenly ‘harmful’ and ‘unethical’? How did something right become wrong so quickly?

Just Eat The Cookie and Die

It’s amazing to me how many people are willing to sacrifice others for a false sense of security, to make them feel safe. It’s even more amazing when it comes from someone in your own family who has had the time to know your life, your experience, your health issues, your story, and yet they still want you to eat the cookie that could potentially kill you, just to make them feel safe.

The cookie in question would be a cookie that you have a known allergy to, as well as a prior history of eating that cookie and having your health destroyed. Knowing there are many others like myself who have also eaten that cookie and had the same reaction and struggling just to live life with the myriad of conditions and health issues spurned by those damn cookies.

Those cookies destroyed my health. When trying to find out why, no one seemed to care. What makes my genes different? What made people like me respond in the way in which we did? There’s an obvious genetic component involved but no one wants to study the issue. Why? I can only assume, since the manufactures have no real liability, they have no real incentive to research the issue. Studies costs money. There are many many willing participants who’d love to be involved to see what makes us different so we can enjoy a safe cookie like everyone else but we’re the minority and I’ve since learned, we really don’t matter. No one wants to spend the money and they likely don’t want to admit that their cookies can cause that kind of harm in the first place.

For two decades, I’ve brought up these questions. I’ve asked medical personnel. I’ve been silenced, gaslit, and told correlation doesn’t equal causation… Let’s think about that last statement. Correlation doesn’t equal causation. Wow, can that apply to many things but in my cookie case, it almost always seems to apply. We know that only a small number of people have their injuries reported in the first place. This is fact. Even drug reactions are rarely reported, I’ve witnessed that many time. If these reactions are not being reported as they’re supposed to, then we don’t have a legitimate accurate database where we can see how many people had the exact same reaction and how that reaction grew over time. We miss the obvious, that many have had that same response and correlation is looking much more common than otherwise reported. Seeing those numbers would then, ethically prompt more research into the issue. Just like a black box warning applied to meds that were later deemed unsafe for a subset of the population. But cookie injury reporting is one of the least of all reported types of injuries. Again, is it the lack of liability? Why wouldn’t we want a safe alternative for those who can’t digest it?

In becoming injured by those infamous cookies, health declining and disabled, I have become the vulnerable. The vulnerable who can no longer eat of those cookies. It would be harmful to my health and since we don’t know what the mechanism is behind it, we have to assume it’s the entire cookie. Had they researched the issue, maybe we could have pinpointed something in it or understood the way in which my body processes those cookies but again, no one cared enough to investigate the issue. In addition, current cookies now contain an ingredient that I do have a known allergy to. And sadly, I was told by my own family member that I should eat it anyway. Aren’t they the ones who are supposed to eat the cookies to protect me? The ones who can’t? That’s the line we’ve been fed for generations yet that somehow suddenly doesn’t apply? Or is my family member just being toxic and selfish willing to sacrifice another for the impression of saving himself? That’s what catering to the ‘greater good’ does to people. It’s always at the expense of another and I just so found out, I am the other they’re willing to sacrifice. Doesn’t look good on this side of the fence.