A mom doing dishes, stressed out with children in the background.

To the Chronically Ill Parent Who Feels Like a Failure

66
66
1

Parenting – it is the most important job on earth. Even for the healthiest person, parenting is not for the faint of heart. Add a chronic illness into the mix and a difficult job can seem impossible. That’s why when
I, the mother of four, became ill with chronic Lyme disease and co-infections, starting intensive treatment for those illnesses, I found myself feeling like I was failing at the most important job assigned to me… being a mom.

The pain, exhaustion, brain fog, rage, and confusion caused by the diseases made it impossible for me to be the mother I once was. The fun, outgoing, energetic, type A mom had shriveled into one that could barely get out of bed and take care of herself much less four other souls. I was devastated because I was sure that my kids were better off without me. I was sure I was destroying their childhood and causing them major trauma because I could no longer do the things I used to do. I was sure that when they grew up the only thing they would remember about me was that I was sick and tired.

One day I opened up and told a friend how I was feeling. Her response to me was one of the greatest gifts I’ve received and, for me, it created a paradigm shift about parenting while healing from a chronic disease.

Her advice was to stop thinking about all the things I couldn’t do with my kids right now and focus on the character traits I was helping them develop because I had a chronic disease. It was extremely helpful advice, so I’m passing along to you five things you may not realize you are helping your child learn, even while you are in bed. I hope this helps you feel confident that you are, indeed, not failing as a parent.

1. Patience

You probably can’t do things as fast as you once could. Pain and exhaustion are sure to slow you down, but that is OK. You are teaching your child patience when he has to wait a few more minutes for a request or need. Sometimes he may even have to wait much longer for a want (such as wanting to do something active like going to a playground). Learning deferred gratification is a valuable lesson in this instant world.

2. Commitment and Dedication

You are teaching your child commitment and dedication every single time you take your medications, stick to your anti-inflammatory diet, and keep your doctor’s appointments. It takes a strong sense of commitment to heal from this terrible disease and you are showing your child first hand what it means to be dedicated to a cause.

3. Responsibility and Self-Reliance

Passing on some age appropriate chores to your child that you are struggling to complete not only teaches them responsibility and self-reliance, it also allows them to feel like a contributing and valuable member of the family. It’s OK if you can’t do all the chores you used to. Depending on age, kids can pitch in by doing laundry, cleaning, cooking, babysitting younger siblings, taking care of pets, collecting trash, packing lunches for school and other various chores. Rest is paramount while your body is fighting off infection. Save your energy by enlisting the help of your child.

4. Empathy and Compassion

By allowing your child to see you in a vulnerable and needy state, and by allowing them to help you, your child is exercising his skills of empathy and compassion. Explain how you feel on an age appropriate level and let him “take care of you.” Accept his small gifts of kindness such as handmade get-well cards, cups of water, and band-aids with an open heart. Even if it doesn’t make you physically better, it should ease your heart knowing your child is developing a sense of empathy and compassion for others.

5.  Lifelong Healthy Habits

Many chronic illness patients live a healthier lifestyle than they did before they became ill. All of those things you are doing to help yourself heal such as eating healthier, doing gentle exercises such as stretching or yoga, and taking quiet time to yourself to rejuvenate sets a positive example to your child that taking care of yourself, both mentally and physically is important. Let him stretch with you, nap with you, eat healthy with you. Soon your good habits will be integrated into his life as well.

Hanging on to the guilt associated with thinking you are not parenting well does not help you in the healing process. Let those negative thoughts go and start focusing on the beautiful qualities and traits you are fostering in your child without you even realizing it. You are enough. Your child needs you just as you are. Even though some days you may not feel like it, you are succeeding in the greatest and most difficult job in the world… parenting.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: DGLimages

66
66
1

RELATED VIDEOS

TOPICS
, Listicle
JOIN THE CONVERSATION

Things People Say That Can Be Hurtful to Those With Illness or Disability

90
90
0

I admit I wasn’t always sick, although I was predisposed and felt less than “normal” even in my youth. I admit I was ableist as well, because I was looking at things from my own subjective lens, and ignorantly so. While struggling with Lyme disease has debilitated me both physically and emotionally, there was a blessing to it: my newfound understanding of what it’s like to be chronically ill and the growth of my compassion for people with other conditions, and whatever hardships human beings undergo in their life journey.

 

That said, empathy isn’t always inborn for people, it’s a learning curve that needs to be cultivated ad infinitum. Expecting a person to feel compassion from the start for something they never experienced before and don’t have the slightest clue about is unfair, albeit justified, but educating them can go a long way to nurture positive, satisfying and empathetic relations with them. It’s silence that hurts all parties involved.

When I got sick with Lyme disease – and even well before, when I noticed my health and well-being degrading gradually to the point that I wouldn’t go out as much or function like a regular person – I started noticing certain things said by able-bodied people that sincerely hurt me. The statements are, of course, well-meaning, but they stem from ignorance and ableism. I spoke a great deal with those in similar situations and they confirmed being injured by the equivalent statements. And these well-intentioned statements and acts of kindness not only hurt the chronically ill and disabled community, they do something even worse: they continue to propagate discrimination against people who are “abnormal” and compelling us to be “normal” – and pronto!

Please, family and friends and acquaintances of the chronically ill and the mentally and physically disabled, do not say or do the following if you want to have our best interests at heart.

Don’t tell us at least it’s not [insert ailment name].

It doesn’t hearten us to feel hopeful and grateful when someone tells us that at least our illness isn’t terminal or at least we can walk and talk and eat and sleep. For one, there are people who never get well and have to live with their illness for the rest of their life. When it comes to a mental illness, there’s no such thing as mind over matter and being cured of it, because it’s an actual illness that needs to be addressed and managed indefinitely.

And physical disabilities don’t suddenly disappear – they have to be accommodated forever. Likewise, experience with illness is individual. Who’s to say one person’s struggling takes precedent over another’s? All I can say is the struggling is real and painful and isolating for anyone who has to live with that every day. If we could all acknowledge that, there would be better understanding and more research funding for illnesses less recognized by the healthcare community.

Don’t give us unsolicited, ill-informed advice.

Don’t tell us to try this supplement because it helped someone else you know or to try yoga or meditation or qi gong because you read an article about someone who got cured of their ailment by doing the latter. You may not realize it, but we know practically everything about our condition and may even have tried everything possible to heal or manage it; only we and our practitioner know what’s best for us, not you. If you’re so inclined to give a recommendation that may – or may not – be helpful to us, do ask us first if we want to hear about it, and be mindful when you do. Don’t force your advice upon us when you may not have a full understanding of our condition or disability and what it’s like to walk in our shoes.

Don’t call us derogatory names.

We’re not “crazy,” we’re not “retarded” and we’re not “hysterical.” We’re not exaggerating, we’re not attention-seeking. We’re seriously ill or disabled, and our struggling – oftentimes invisible to the bare eye – is real no matter how difficult it must be for you to perceive and grasp that. So please refrain from calling us names that don’t do us justice, that make us feel less than.

Don’t trivialize and invalidate our struggling further.

Other ways you can further hurt us is by not believing us when we talk about our illness, by comparing it to something that is deemed more serious by abled people, essentially not taking our struggling in earnest. And please don’t tell us to “get off our lazy butts and get a job” or “get better already and start moving forward.” Some of us are healing slowly, while others are coping. Some of us may never get well and have to rely on pain management and therapy to maintain some semblance of wellness, to be able to do some of the things that able-bodied people do effortlessly.

Instead, you can be a supportive ally and advocate to the people with chronic conditions, mental illnesses and physical disabilities by first listening to us, validating our hardships and educating yourself on our struggling. You can – and should – admit you’re privileged in that you’re abled and your life experience is truly not the same as ours.

Lastly, you can call others out on their ableist ignorance when you witness injustice being done against people with physical and mental disabilities. You may not be comfortable with it at first, but it’s the only way to put an end to the perpetual damaging social stigma being done against us and our experience as people who do not navigate the world the same way as healthy, abled people do. And this goes without saying: I hope someday in the near future we can finally stop justifying and defending ourselves and each other and recognize that we matter, that our lives matter.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Ryan McVay.

90
90
0
TOPICS
JOIN THE CONVERSATION

Your Loved One Is Chronically Ill? Here Are 8 Things You Should Know.

1k
1k
5

When you are chronically ill, you are forced to fight battles you did not choose. The battles never end; you are fighting illness 24/7 and it is tiring, messy work. It can affect all areas of your life, wreaking havoc with your relationships, employment, education, finances, social life and so on… it can tip your entire world upside down. And it doesn’t just affect you; it also affects the lives of everyone around you.

If you are lucky to not have a chronic illness, I cannot expect you to understand what I am going through. I could ask you to step into my shoes, but you cannot truly understand what I am going through unless you are me. All I can do is try to help you understand what I am dealing with. Here are some things that I want you to understand about my chronic illness:

1. I may look well, but I’m not.

Do not be fooled by my appearance. I may look well, but beneath the surface is a world of pain and fatigue. If I say that I am tired, then I really am tired. I am not malingering, or lazy, or imagining my pain. If only I could show you what goes on beneath the surface, you would be horrified by what you would see. I may often be in constant pain, the sort of pain that meds cannot numb.

If you become chronically ill, you may lose your mobility, or become disabled. Sometimes, there is visible evidence, such as mobility aids, prosthetic limbs, or scars; these are the battle wounds that can be seen, that people believe. But when the battle goes on beneath the skin or within the mind, the battle wounds cannot be seen. No-one can see that my body is on a self-destruct mission, or that my mind hurts. They cannot see my wounds and people will not believe in battle wounds they cannot see. Did you know that 96 percent of chronic illnesses are invisible?

2. Just because I have a good day, it doesn’t mean that I’m better.

It just means that I’m having a good day. Tomorrow may be different. My illness is unpredictable and I have no control over it. Often, I am unable to attend family and social events

3. I hate the loss of my independence.

Having a chronic illness can leave you housebound and dependent on other people. Being ill has taken away much of my independence and at times I feel like a prisoner in my own home. You may lose your income and are not able to support yourself; you may be unable to look after yourself and it may become a struggle to maintain your dignity. It is difficult to explain these things to other people, to medics, to your loved ones and to those who take care of you. I feel like a burden, an inconvenience that must be dutifully dealt with; a chore. I take, take and take, just to stay alive, but I’m unable to give much back in return.

4. I feel guilty all the time because I feel like a burden.

I require a lot of help and attention, which may interfere with your own life, with your work/studies, friendships, your social life and so on. You may spend half your life taking me to medical appointments and running around after me because I can barely look after myself. I am sorry that living with my illness causes you so much stress and interferes with your life. Sometimes, I feel like I’m being blamed for my illness. Psychology Today writes that “adults who tended to blame themselves for their chronic illnesses did more poorly because self-blame is not only demoralizing but it also creates significant internal stress which…[causes] further declines in health which then lead to more self-blame.”

5. Life with chronic illness is lonely.

You may struggle with isolation and loneliness, even when you are surrounded by people. You cannot relate to them, they cannot relate to you. And even when you are being cared for and have people around you, you often feel alone and you feel that no-one understands your pain. Humans are social animals, we rely on each other to stay alive. My chronic illnesses has cost me many friends and loved ones. I have no social life because I am mainly housebound, and sick friends aren’t much fun. It is during your worst times that you learn who your real friends and loved ones are.

6. Being chronically ill affects my state of mind.

Just like invisible physical illnesses, mental pain is unseen.

People usually tell me to:

“Pull yourself together.”

“Just snap out of it. Get over yourself.

“You’re just being awkward.

“You’re antisocial.”

You just want attention.”

But they do not live with the constant terror of anxiety, or the numbness of depression. Being alone, isolated, stressed, anxious and depressed from dealing with your chronic illness can wear you down. We are chronically misunderstood by society, friends, family, and even healthcare professionals. We are often housebound, and so we can feel isolated and trapped. Dealing with all this is frustrating and exhausting, especially on top of the physical problems we contend with.

7. I am still me.

I know that at times my illnesses seem to consume me, but it doesn’t mean that it has killed the person I am inside. I am still there. I am still me and always will be. Beneath the layers of physical and mental stress, I am still there. If I slip beneath the waves, look for me, because I am still there. Despite the changes and years that have passed since I became chronically ill, I am still here and I am still me. We all have many challenges in life, ill or not; chronic illness just happens to be one of my many challenges. My chronic illness is a glove I am forced to wear, but just like the many other items of clothing I own, it is not a part of me – it’s just something I wear.

8. I know that you struggle too.

You think that I do not see it, but I do. You think that I cannot hear you, but I am. I am acutely aware of your struggles and it is unbearable, knowing that you are struggling from my illnesses too. I see how it tires you out and takes up most of your time, I see how it stresses you out and threatens to overwhelm you. You deserve to be cared for too. So I feel powerless watching you struggle and not being able to do anything about it.

Please do not think that it’s all about me. It’s about us and how we fight this together.

If you are fighting this battle with me, by my side, please know that I am grateful for you sticking by me and caring for me. It means more to me than you could ever know.

Follow this journey on Word According to Lupus.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: Roz Woodward

1k
1k
5
TOPICS
, Listicle
JOIN THE CONVERSATION

The Chronic Illness Metaphor I Find More Accurate Than the Spoon Theory

200
200
0

I’m sure you’ve all read the spoon theory. It’s a great attempt at describing how we live, but it falls short for me. It seems like spoons are seen like a battery. What do we do when a battery runs out? We plug it in to recharge, or simply go to the store to purchase a new one.

 

Here’s the problem: We aren’t batteries. We can’t replace a malfunctioning piece, or take a little break, and be like new. That’s not how it works for us.

I see it more like a ticking time bomb. There appears to be nothing wrong, until boom! Our world has exploded. Just like a bomb, our inevitable crashes have a cause, and you can see the warning signs if you look close enough. With enough skill, you might even identify the bomb early enough to put a little distance between it and yourself. But it takes a very skilled person to locate and disarm the bomb before it goes off, so the majority of these bombs explode.

The reason for each of our bombings is very different, but they all have these similarities. We’re all plagued by a “bomber” that is set on destroying our life. We may be alive, unlike many literal bomb victims, but look at it as if your body is a city. The entire city doesn’t generally crumble from a single bomb. However, there is collateral damage. The library explodes, there’s brain fog; the park, muscle fatigue; the theater, sensory overload; the hospital, inflammation. All these things add up, until you have no choice but to rest. It’s not something you can just slap another battery in and keep going. It’s something where your world stops while you pull yourself out of the ruins and rebuild.

I guess what I’m getting at is that something as mundane as a spoon can’t describe the heartache and exhaustion and defeat we feel. It’s as catastrophic as a bomb.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via stocksnapper.

200
200
0
TOPICS
JOIN THE CONVERSATION

Dear Chronic Illness: Carrying Your Burden Has Made Me Stronger

8
8
0

Dear chronic illness,

You slid your way into my life when I was looking the other way. I didn’t notice for a while, believing I was an average teenage girl.

But then you ran over me and how was I not to see the boulder I had acquired on my shoulders, the weight I had to carry around and your shadow looming over me?

 

You knocked me off my feet and knocked my dreams down as well, and as I rushed to pick them up you tried to stop me, but I was faster than you.

It’s hard, having you there all the time. I don’t know when you’ll bring me down next, or what little success I’ll have that you’ll ruin.

You like to surprise me, hitting me when I don’t expect it. Maybe you think it’s funny, or a favor to me, but what do you know about what I want?

It’s strange, carrying you around. You seem so big and frustrating to me, but I look around at ignorant faces and they are oblivious – you are visible only to me.

But I am learning. I am learning to walk again, and one day I will run. I am learning to do everything I used to do and more, despite your ongoing presence.

I don’t expect you to ever leave, but that’s OK. I know now how to live with you.

I don’t expect you to understand, but how can you, when all you know is limiting and confining me?

Carrying you around though, I am stronger now because of you.

Carrying you around, it’s not as hard as it used to be.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via CreativaImages.

8
8
0
TOPICS
JOIN THE CONVERSATION

Balancing My Labels as a Person With Chronic Illness

13
13
0

Sick, sweet, quiet, shy, straight, girly: labels stuck onto my back by the world. Whether I agree with them or not, those labels are fused with my public identity. Some labels are vitally important, particularly within the medical universe. All of my diagnoses are simply labels for physical challenges…challenges that existed long before they had official names in my medical records. Still, I hope for another label. Having a more specific mitochondrial disease classification could help me get into more studies and future drug trials. In that sense, a label is a positive, clarifying tool. However, living with more than the average number of labels has made me wary of them. How do I strike the balance between evolving person and diligent patient?

 

My instinct is to remain open to change and growth. I avoid pokey boxes and sticky nametags. As a child, I preferred to be friendly with everybody rather than throwing myself into one little social group. I didn’t want to be defined or cut off from potential connections because of a tight, exclusive little clique. As an adult, that really hasn’t changed. Rather than letting everyone around me shape my identity, I try to break the boxes down. Labels and identity go to together like peanut butter and jelly. Turns out, that’s one combo that causes discomfort for me (literally).

I accept medical labels as necessary parts of my life. Mito, EDS, POTS, gastroparesis, PCOS, and Hashimoto’s didn’t just appear on my chart overnight. It took years to reach many of those conclusions, and they lend my story legitimacy in exam rooms. “Spoonie,” a label describing people with chronic illnesses, is an accurate label. While I’d rather not have any reasons to identify with that word, I actually have lots of them. Since it’s impossible to shake off those physical reasons, I’ve chosen to write and speak from my spoonie perspective.

While I see the value and power in possessing my medical labels, I’m rapidly approaching my personal label limit. Outside of the super-wordy medical universe, I enjoy being less defined and fluid. OK, I’m not going to knock out the next person to slap me with a label! Part of reclaiming my identity is allowing some labels to peacefully float away. As I live my life, various choices and actions will do the work for me. Wishing every label out of an acquaintance’s mind won’t wash them away, so the next positive step is to focus on my internal labels.

Inside, I’m the label-maker! How I choose to label my sexuality, faith, style and personality is up to me. If I’m comfortable with being quite fluid throughout many areas of my life, then that’s my business. It’s not my solemn duty to share my internal labels with everyone I meet, and it’s not anyone else’s role to attach new labels. As a person – not just a breezy-gowned patient – my identity is a vibrant tapestry of labels and experiences. I’ve benefited from some labels and felt the weight of others. It’s not realistic for me to remove every label from my being, but it’s possible to harness their power and claim my identity.

Follow this journey on Maria Gracefully.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Photodisc.

13
13
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.