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

Sliding Doors: An exercise in “What If”

“Pieces” self portrait

Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another. 

I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan. 

This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it. 

I imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps. 

I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way. 

It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe. 

In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids. 

Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s. 

There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades. 

I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”. 

The door slides again. I step back through the wormhole. 
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.

This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling. 

This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone. 

There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life. 

I’m not entitled to any other existence. 

This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future. 

It’s not over yet.