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Unfortunately For Those with Invisible Illness, Seeing is Believing

Seeing is believing, or so they say. This is unfortunate for those of us with invisible or hidden illnesses, because if unseen, it is often not to be believed. We expect others to have “faith” when it comes to many things. Faith is believing in something unseen. Why can’t people have faith, then, in those of us who “don’t look sick” but truly are?

Invisible Illness Week 2015 is coming up. So I challenge all of you who have ever judged, stigmatized, questioned, patronized, or simply not-believed someone who is invisibly ill. I challenge you to re-think your stance, your attitude, your behavior. Consider how you think about sick people. Think about why you place value and legitimacy on some illnesses, but not others.

Why are invisible illnesses doubted more than visible ones? If someone has bald head from chemotherapy, is in a wheelchair for a disability, have lost a limb from war, or even have chicken pox on their skin, society believes them. Society feels bad for them. There is often empathy, compassion, sympathy, understanding. Sometimes pity. Sometimes admiration. Doting. Trusting.

But then there’s a person like me: a person who loves fashion, and makeup. Who is ambitious. Who wrote a book. Who, to the untrained eye, and at a glance, seems relatively fit. Someone who tries to look nice. Someone who tries to be nice. Someone who carries nice handbags and has nice values and a nice, positive disposition. Because I don’t look or even usually “act” ill, there is a general sense of disbelief that surrounds my health condition. (Or, shall I say, the 40-some-odd health diagnoses that I’ve been handed over the years.)

And I’m not the only one. So many people are in similar “unseen” situations.

But why are people so quick to judge invisible illness?

What would it take for you to believe me? Should I wear a sign that says: “I’ve had brain surgery. I have had chemo. I walk with a limp most days. I get crippling systemic migraines — which are, by the way, a neurologic condition and not just a headache. I have had autoimmune rheumatoid arthritis since I was a child. I have a blood disorder. I have a weird heart thing. I have an autonomic nervous system disorder. I have had my heart medically stopped. I’ve been unable to open a jar, make a bed, brush my teeth, drive myself to the pharmacy or the hospital. I’ve been unable to sleep and unable to stop sleeping.”

Should I explain to people that my weight fluctuations are often due to medications and/or symptoms? Should explain that my legs and knees are ugly because of permanent joint damage and some muscle atrophy from mixed connective tissue diseases? Should I explain that I can’t wear heels for very long — if at all — because I have a congenital foot defect and major rheumatologic changes in my feet that makes walking exceptionally difficult sometimes? Should I explain to people that I’ve needed a knee replacement since I was 25, maybe earlier? That I just got a medical bill in the mail for nearly $30,000? That I inject myself with a biologic drug every Monday?

Should I tell you that I’ve lost some vision, lost some hearing, lost some friends, and lost some jobs all due to my health?

Would you believe me then?

What if I told you that arthritis is the leading cause of disability in the entire country? That 1 in 2 people suffer invisible and debilitating chronic pain? That these diseases cost our healthcare system more than cancer?  That juvenile arthritis is one of the 6 most common childhood diseases in the United States? What if I told you that, yes, people can die from autoimmune and inflammatory conditions? Or that they can turn into cancer, or be linked to heart disease?

Would you then take our invisible ailments a little more seriously?

How can I explain things in a way that you will understand, that you will truly HEAR what I am saying — and “get it?”

How can I explain, without it sounding crazy, that I don’t fully remember some of my college years — and not because of alcohol (although, that was a part of it! #NoRegrets lol!) but because I was in a deep brain fog because of my autoimmune, rheumatic, autonomic conditions, my brain herniation, my Bell’s Palsy, and more, coupled with a haze of fatigue and medication side effects?  My guess is that you wouldn’t believe me.

But why?

If someone with cancer told you that, you’d probably believe them. After all, cancer patients experience brain fog, fatigue, and medication side effects too. And guess what — many of their medications overlap with the ones I’ve been on. But you’d believe them — and not someone like me.

Ask yourself why.

Is it because more is known about certain diseases than others? Is it because autoimmune and similar chronic invisible ailments are so utterly complicated and difficult for even medical professionals to understand? Is it just a stigma, a connotation? And if so, what can we, as patients, combined with the medical community, do to change it?

I pose yet another question: is it because I am a woman that you have trouble believing in my health problems?

Is the notion of “hysterical female” skewing your viewpoint? It could be — after all, most patients with autoimmune or rheumatic disease are, in fact, female. Is our gender a hindrance to being taken seriously? I don’t want to get all “overly feminist” on you all — but it could be. It surely could be.

So let’s change the conversation. Maybe instead of focusing on judging someone who is ill, or questioning their health or their intentions, you simply try to understand them, or, at the very least, be there for them. Ask them if they need anything from you. Tell them you’ll keep them in your thoughts. Research their disease if you’d like.

But whatever you do, don’t write them off.

No one in their right mind would purposefully choose to live the life of a chronically ill person, especially when those chronic illnesses are invisible to those around them, thus causing skepticism and criticism.  And if someone IS “faking” having these awful conditions? Well, then they are sicker than I ever hope to be — sick in a different kind of way — and people with mental and emotional psychosomatic illnesses need your help, love, and prayers even more than those of us who are truly physically ill.

The point is: love one another. Be kind. Don’t judge. Don’t assume. We’re all walking this journey together. Or wheeling. Or limping. Or crawling. Or whatever the case may be. Our paths may differ, and the way that we may arrive at the destination of our dreams and our goals may vary, but we’re on the same playing field, the same plane, in the same earth, of the same universe.

So if you’re going to question the validity of someone’s illness, first question why you feel that way. Then question where you are on that aforementioned path — are you even in a place to point fingers, to question or judge? Then question if it’s even worth questioning. It’s probably not. It’s safe to assume that if someone claims they are sick or disabled, that they are sick or disabled. I would advise when dealing with an invisibly ill person, to err on the side of caution and assume that, yes, even if you can’t see it, we are telling the truth.

See us, hear us, and, believe us. That’s all we want. Unless a cure happens in our lifetime, we’ll be living with our condition most likely forever. So anything that can be done to ease that journey — even if that thing is just a smidgen of hope, a glimmer of love, or a glimpse of empathy and understanding, would make our burden that much less.

#InvisibleIllness

#InvisibleFight

#iiwk15

Check out my book Sick Idiot! http://is.gd/SickIdiot

Let’s get this post to go VIRAL in honor of EVERYONE around the WORLD fighting the INVISIBLE FIGHT!

One thought on “Unfortunately For Those with Invisible Illness, Seeing is Believing

  1. It’s frustrating dealing with this pain. I’ve had joint problems since childhood, so you kind of get used to it, but it’s still something people who don’t have it will never understand.

    Have you ever tried raw ginger or gelatin. Those things work well for me. The ginger helps to reduce inflammation and the gelatin helps to reduce pain in the joints.

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