Rare Disease Day 2021 Feb 28

Why are people with Rare Disease called ZEBRAS?🦓

When doctors are in med school, they’re taught that when you hear the sound of hooves, it’s probably a horse.

That means, when a patient gives them a list of symptoms, and it sounds like a common condition, then it’s most likely that common condition.

HOWEVER, there are exceptions to that rule.

Sometimes the sound of hooves are actually zebras.

We as patients may present like we have one (or several common conditions), but can actually have a rare disease that’s difficult to spot, hard to diagnose, and even harder to treat.

We are called zebras, and in the Rare Disease world, zebras have MANY different color stripes.

🖤🤍💙❤💛💚💜🧡🎗✊

If you feel down and useless today: Chronic Illness and Chronic Pain

If you’ve been glued to your couch or imprisoned in your bed because of chronic disease or intractable pain…then you may feel trapped, hopeless, even useless. Are you getting tired of staring at the same 4 walls and know that you’ve been made for more?

Whatever you’re feeling right now, your feelings are completely valid given everything you’re going through. Whether you’re feeling depressed or hopeless, frustrated at doctors, even angry at God, all of those feelings are understandable and very difficult emotions to process.

You’ve lost so much in the battle with your health. It’s okay to grieve over your life, and grieve the loss of your health. You built a good life, and the threat of physical invasion is more mentally overwhelming than anyone around you could possibly realize. You didn’t choose this battle, but you’re in it nonetheless.

It’s important to give yourself permission to mourn the things you’re losing. That’s what people mean when they say “be kind to yourself” or “give yourself a break.” Self compassion isn’t the same as self pity. In fact, self loathing begins to dissipate when self compassion enters the picture. If you would show love and tenderness to your daughter or grandmother in your situation, then do the same for yourself. You’re worthy of that care. Dig deep and find understanding and patience for yourself (even if other people around you haven’t).

When we say chronic illness is a “battle,” that’s part of it. Being a warrior is choosing to treat your body with patience instead of anger- even though you may not feel your body deserves your understanding for how it has betrayed you. Being a warrior is giving yourself dignity simply because you’re human, and worthy of it no matter your health or ability status. Being a warrior is staying in this game of life, even when leaving feels like your only option. Of course, battling chronic illness refers to the rigors of healthcare and living through the “hell” in health, but it also refers to giving understanding to the people who don’t understand us in return.

Then, consider finding something constructive to do from exactly where you are. Whether that’s offering to moderate in your favorite online support group, or taking a free web course for something enjoyable (see Domestika.org), getting involved in a weekly Bible study online with a friend (see YouVersion app plans), an online book club over zoom, or getting into a new hobby that you can do laying down.

I know your brain is pushing back with all the reasons you can’t do it, and may already be making you feel that it’s a pointless cause, etc. That’s the same part of your brain that likes to tell you that you’re lazy, and says that no one actually cares about you– it’s just not true, my friend. You’re not lazy, you’re ill. People do care, but they may not know exactly what you need right now. That ugly little gremlin in our brains is a straight up liar.

Just find one new thing, and try it out temporarily. You don’t know where it will lead, who it will impact, and how one small change will help you in the long run.

Your job never defined you in the first place. You are still you and you are still on your journey ❤

You are loved. You are not alone. Please take good care of yourself,

Mary

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Join us at the disabled art share group Chronically Inspired on Facebook where we share our adapted projects, and encourage each other to get back into doing the things we once loved.

In a time of Crisis…. Managing stress during covid19

artwork by Ruben Ireland

In the past, I’ve written on rare disease and adjusting to life after becoming homebound. As the world learns to cope with the reality of life at home, threatened by a terrifying virus, and concerned for what the future has in store, this is the only topic I’m compelled to write about today.

While we live under the shadow of Covid19, how are you handling the images in the media? How are you coping with social distancing, and isolation? Have any of your family or friends tested positive?

Here we’ll be discussing some of the feelings that come along with heightened stress, and why it can make our lives seem out of control.

In a crisis, the natural reaction is to feel shocked, upset, overwhelmed, concerned, confused, sorrowful, and/or physically agitated. If these feelings sound familiar to you, then take some small comfort in knowing that you’re reacting like a healthy, normal human being.

Though these feelings can be physically and emotionally difficult, they are completely understandable under the given circumstances.
On the flip side, if you were living without a care in the world, then one might wonder if you understood the gravity of the situation. Staying in denial might feel better temporarily, but it can lead you to take dangerous risks for yourself and your family. Failing to grasp the seriousness of our situation may lead you to go as far as spreading misinformation or even the virus itself.

Concern serves a purpose and it’s the appropriate reaction for survival. Concern can be a very useful emotion, and keeps you more alerted to possible dangers.

We generally try to avoid or ignore our concerns and feelings of stress, but in a crisis situation, remember that feelings of anxiety are there to serve a purpose. It’s perfectly understandable to be worried for your loved ones. It shows a heart of compassion; it can drive you to check on the people you care for, to listen to local authorities, and to go the extra mile to keep your family safe.

Everyone is sorting through their own unique life circumstances due to the “Stay at Home” orders. If your regular routine has been interrupted by the quarantine, then you’re even more likely to feel the pressure. When you lose control over your plans, you can begin feeling as though life has become chaotic, and you’re helpless to change it.

Losing your workday and regular routine can also cause confusion, feeling a loss of accomplishment, lack of motivation,  and feeling a sense of uselessness. Being alone with your thoughts in isolation all day removes your typical daily distractions which can make stress seem even more pronounced!

These are distressing times, and the images in the news can play up our worst fears. It’s the media’s job to capitalize on the most distressing images and stories- the ones that grab our attention, and get our adrenaline pumping. I would caution anyone from watching too much broadcast news. Especially if you’re home with access to the news all day; it’s guaranteed to pump the volume up on your stress. The same goes for unsubstantiated conspiracy posts on social media which are meant to tap into your deepest fears.

In the moments when anxious thoughts flood your mind, logic won’t always prevail. Your survival instincts can begin to override. During periods of crisis and high stress, you may find yourself in “Survival Mode” (Fight-or-Flight).

If so, you might be experiencing: nervousness, sleeplessness, bursts of adrenaline, agitation, excessive loneliness, intrusive thoughts, racing mind, mood swings, sudden bouts of exhaustion, and confusion.

In survival mode, we instinctively want to fix things. We feel the need to actively find solutions, which is a great motivator, however, it can also lead to feeling helpless if we don’t have ways to exercise these desires. Feeling helpless combined with high stress and isolation can be a slippery slope to feelings of worthlessness. If you have a family member with a history of depression, try to check in with them during this time, and let them know how much they mean to you ❤


You may not be able to find a cure for Covid19 or go back into work yet, but using your energy to do a hands-on project at home will help you get a better sense of control, and therein begins your new routine.
Building a new routine at home will help you feel more in control. Building a routine can be as simple as getting up at the same time each day, making breakfast, and limiting your screen time.

On that note, I would encourage you to avoid the common terms “positive” and “negative” emotions, and instead give yourself permission to feel whatever you’re feeling. Specifically, labeling emotions as “negative” can make us feel as though sadness, loss, heartbreak, and frustration, are somehow forbidden. If we view our most challenging feelings as “negative,” it can unintentionally, cause a sense of shame or wrongdoing. Though some feelings are uncomfortable, they help us learn, grow and build character.
Acknowledging our full experience, however difficult, can also allow us to have more empathy and compassion for others.

Seasons of struggle have a way of making us feel alone inside of our pain. If it seems as though no one understands, if you’re feeling withdrawn, depressed and/or have a sense of doom, I would urge you to contact a counselor through an online therapy app. Please take good and gentle care of yourself! (You’re the only beautiful you that we will ever have.)

We should all try to reach out to our friends and family by video chat during this quarantine for some social interaction, get some fresh air, and find creative ways to connect with one another (safely) online.

If you’re staying at home, and observing social distancing, I thank you personally on behalf of my immunosuppressed self and all of us who are at higher risk. After almost 9 years, I understand that the idea of being confined to your home can at times sound like a prison- to be given boundaries you can’t cross. But this boundary is to keep you safe, to keep the virus out, not to make us feel trapped or alone.

This season will be over soon. For now, let’s make the most of this time and try to be the best versions of ourselves we can be in the face of hardship. Reach out, check on your elderly friends and those with disabilities and chronic illness, since they may have difficulty getting basics. Caregivers and delivery programs may not be serving them right now, so an offer to help might be appreciated.

Most of all, I want to remind you that you’re not alone. The entire world is going through this difficult time collectively.  Thank you for continuing to help your community by staying home, and remaining socially distant. It’s a sacrifice you’re making for the greater good!


Keeping our healthcare professionals, essential workers, and all those fighting this virus in our prayers and on our hearts. Also praying for the safety, health and healing of our brothers and sisters around the world. Let this be a time of community, understanding, and finding more gratitude with every passing day. We hand over our fears and uncertainties, trust the future to you, and plant our feet in your eternal hope. Amen.
God be with you.

Thank you for reading. Take good care, and stay well. -Mary


More resources:

How to manage anxiety in a changing world

10 ways to deal with big changes

25 ways to volunteer from home

Precious Diagnosis: What’s in a Name? #raredisease

Every time you click this link, $1 will be donated to research for a rare disease. Keep on clickin’! Thank you! Rare disease day, Feb 28th.

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Natalia Drapina Radiograph of my Sorrows

Just to have a diagnosis, you’d accept even the worst titles. You dream there will some day be a label for the madness eating away at your body and your life.

You want to scream when test after test returns “normal.” You feel hopeless when time after time, appointments end without any answers- you wonder how much longer your body will hold out like this.

Each frustrated physician is at a loss, and they worry that anything more they try might only make you worse. So, one by one, they set you free into the river of uncertainty to face the un-named beasts in you alone.

Instead of one confirmed diagnosis, you have a long list of symptoms masquerading as conditions. “Chronic migraine” for example, or “vertigo.” You instinctively know that they are only symptoms of a larger, more pertinent illness, but no one can pinpoint what it is.

When I was 22, I was diagnosed correctly and immediately with a rare neurological condition.

There are no words to express my devastation; the world as I knew it had crumbled.

The early diagnosis did not help me find remission, but being diagnosed immediately afforded me some stability.

Instead of blaming my body, instead of staying up nights searching online to identify what might be wrong with me, instead of spending years looking far and wide to find the answer to the screaming question disabling me, I could turn toward the crucial journey of acceptance, coping, and seeking treatments. I sought knowledgeable doctors, read helpful research online, and reached out to support groups with the same shared name of my condition. I could blame my disease for my illness, and so could my family.

At 28, I had a very different experience. I became more ill than I have ever been… and I’ve been undiagnosable ever since. Everything has been different this time around.

Tests were normal, doctors gave up quickly and treated me like they were afraid of me. Hospitals admitted me immediately, but had no answers to give.

I began to feel like less of a person and more like a medical chart. The worse I became, the less interested doctors were in treating me. My value as a person was undermined…

I felt so alone, and it seemed that my body was trying to kill me.

For most patients with rare diseases, it can take years to recieve a proper diagnosis and treatment.

 

Seven years is the average wait.

Even if it’s a terrifying prognosis, having an answer, a community, having a standardized list of symptoms, expectations, and FDA approved treatments, is so validating when you are suffering so fiercely. Instead of blaming yourself, you can finally name the monster taking you over.

When you have a diagnosis, those who love you can advocate on your behalf. They can donate to fundraisers and participate in walks, they can pray there’s a cure for the condition torturing you. But when there is no name, people doubt you. It doesn’t matter how sick you are, if you can’t identify why you are unable to move, or sleep, or eat, or leave your bed… people wonder about your sanity. They wonder about your personal will and your strength.

They’ll say you haven’t done enough to get well. They’ll say there is more you could do, and you are just unwilling.

Ironically, the same people will later whisper that you’ve become obsessed with your illness and seeking out treatments – that it has consumed you.

If trying to regain your health has become your priority, do not listen to anyone doubting you. You are trying to save your own life. And your life is worth fighting for! You must be aggressive. Giving up is not an option.

You are not the words on a medical chart. You are not a list of symptoms, and your name is not a condition. You are not your medical history, or your pain level from 1-10. You might be in the habit of talking about matters of health, but please don’t forget about the you who has never left. You haven’t diverted from your journey. You’re the person who made you into the fighter that you are today. The unique, beautiful, lovable, sometimes goofball you. You are the only YOU this world has.

YOU are rare.

As for myself, I have come to accept that my diagnosis is rare and complex. It may in fact forever be “undiagnosable.” Managing the nameless, and finding doctors who are willing to try and do the same is my path now.

We do have labels which help us find each other, support one another, and build community. We can fight together as warriors with a united cause. We can be identified by “chronically ill,” “rare disease” and “spoonie.”

We may be undiagnosable (for now), our illnesses might not be easily identifiable, but we are not invisible.

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Article also published on The Mighty.