9 Harmful Behaviors to Avoid If Your Loved One Is Chronically Ill

7k
7k

Anyone who lives with a chronic health condition knows how frustrating it can be to deal with family and friends who either just don’t understand or flat out don’t care.

Yes, it’s true that most people won’t understand something until they go through it themselves. This isn’t really an excuse for overt selfishness and total lack of compassion, though.

If you are a family member or friend of someone who struggles with a physical/mental illness or disability, here are some things you want to be mindful of. You might be engaging in some of these behaviors knowingly or unknowingly. Either way, it’s unhelpful and hurtful.

1. Expecting them to get over it. It absolutely does not work like that. Trust me. I promise you. Nobody “gets over” an illness or disability.

2. Expecting them to be there for you for any problem you may have, but refusing to take the time to be there for them. This includes calling to ask how they are, asking if doctor appointments and tests went OK and asking them if they need to talk about what’s bothering them. It’s a two-way street. I’ve listened with empathy to stories of divorce, problems with children, sick parents, boyfriend problems, financial struggles, etc. Surely you can give me the same consideration. Calling them to constantly complain about your problems while never acknowledging theirs is thoughtless and selfish.

3. Minimizing their struggles and health concerns. Speaking to them like their problems aren’t valid or making things into a competition will only make things worse for them and make them not like you. Which leads me to my next point…

4. Making illness and life situations into a contest. Contrary to what some may think, none of us are in the running for a medal or an award for who is the sickest. I don’t play that game and neither should anyone else. We are all fighting our individual battles and demons to the best of our ability. Don’t spend your time debating who has it worse. It’s insulting and it’s a waste of time.

5. Forgetting birthdays. This one sounds a little petty, but the truth is, birthdays can be lonely for people who have an invisible or chronic illness. Sending a card or text or calling can make a difference. Most of us have smartphones that remind us when someone comments on our Facebook status. Surely you can find a way to set a reminder to remember a loved one’s birthday.

6. Ignoring them. The worst thing you can do is pretend someone doesn’t exist. It’s the ultimate insult.

7. Blaming them for their illness. Most of us did not choose to be sick. We are most likely trying everything we can to get better. Medications can cause weight gain, fatigue and other health issues. Our illness alone is enough to wear us out. This can lead to or worsen symptoms of depression and anxiety. It also increases feelings of isolation. Don’t blame us for something we cannot control. There are days where the fight is too hard and we need time off. This is not being weak. It’s called taking care of yourself.

8. Telling them it’s all in their head. This is basically the verbal equivalent of slapping or spitting in someone’s face. Just don’t do it – ever.

9. Don’t assume. This is a big one. Don’t assume because I am smiling or put on a brave voice and face that all is well. Don’t assume because I am having a good day and feeling well enough to engage more with life that I’m cured. It’s called taking advantage of having a good day and trying to make the most of it while it lasts.

If you’re doing any of these things, please stop. If you aren’t sure if you are doing these things, print out this list and run it by the person. They will probably tell you if you are guilty of the above. They may even have some pieces of advice of their own to add. Listen and pay attention to what they have to say.

Thank you for listening.

This post originally appeared on Stephen Fratello.

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

Thinkstock photo via izuboky.

7k
7k
TOPICS
, Contributor list
JOIN THE CONVERSATION

To My Future Partner: Thank You For Seeing Past My Illnesses

138
138

Sometimes it’s hard to believe there’s “someone out there” for someone who is chronically ill. Sometimes we reach low points and don’t think it’ll ever happen. Sometimes we can’t fathom someone staying after we drop a line that causes reactions akin to a bomb: “I’m sick and I’m never getting better.”

Other times, we remember that it’s true. If we want to find someone, there will be someone out there for us. If we want love, we can find it.

You, a beautiful light in my darkness, somewhere out there, is that love I’m looking for. I haven’t met you yet, but you’re important to me.

You stayed when I didn’t think anyone would, and you accepted me for who I am. You love me because of me, and you were able to look past my illnesses. I could never, ever thank you enough for that.

And while the list may never end, here are a few things I can thank you for, even if it doesn’t seem like enough.

Thank you for accepting the initial challenge, ignoring my attempt to give you an out when I first told you I was sick.

Thank you for understanding my illnesses to the best of your ability, and believing me.

Thank you for laughing at my jokes and understanding that humor is what helps me through my pain.

Thank you for holding me up when I’m too weak to stand.

Thank you for holding my hand at the doctor’s office, at the emergency room, at the hospital and just because you can.

Thank you for staying when I told you I might not be able to have kids.

Thank you for staying when I told you I don’t know if I can even adopt, if I could raise a child at all or not.

Thank you for all the help if we ever do decide to have kids.

Thank you for recognizing I’m trying even if I can’t do much one day.

Thank you for defining me as more than my illness.

Thank you for changing my perspective on who I am.

Thank you for being strong where I am weak.

Thank you for loving me.

Relationships aren’t one-sided, though. You will never be alone in putting work into ours. While I can’t tell you everything I can do for you, I can promise a few things.

I promise to understand who you are and never ask you to change for me.

I promise to put your best interest at the top of my priority list.

I promise to remember that sometimes it’s not easy to live with me.

I promise to do everything I can to make our house a home.

I promise to work as hard as I can in my profession, on my health and on us.

I promise to hold your hand when you are low, or just because I can.

I promise to accept any challenges you throw at me.

I promise to never define you on one character trait.

I promise to be your best friend.

I promise to be strong where you are weak.

I promise to love you with everything I can.

That might not always be enough, and we might have struggles. We might not understand one another every minute of every day, but we will have the compassion for each other to see past disagreements.

I am much more than my chronic illnesses, and you are much more than whatever the world sees you as. Together, we will be great.

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

Thinkstock photo via peshkov.

138
138
TOPICS
JOIN THE CONVERSATION

What Is My Husband Thinking as He Looks at His Chronically Ill Wife?

99
99

What is he thinking?

As I walk down that aisle to say “I do,” what is he thinking?

As he deploys for the first time, what is he thinking?

As he looks at our firstborn son, what is he thinking?

As he says goodbye to his pregnant wife as he deploys again, what is he thinking?

As he hears over the phone in a war zone that there are complications with the pregnancy, what is he thinking?

As he sees his daughter for the first time, what is he thinking?

As he returns to the war front, saying goodbye to his newborn daughter and toddler son, what is he thinking?

As he receives a Red Cross message in Afghanistan saying his wife, in Germany, is blind and has a brain tumor, what is he thinking?

As he waits in that waiting room during his wife’s brain surgery, that is taking longer than expected, what is he thinking?

As she wakes up from surgery and can see again, what is he thinking?

As he struggles to care for his kids and help his wife recover, what is he thinking?

As he watches his wife recover, but never truly become herself again, what is he thinking?

As the years go by and his wife’s health gets poorer and poorer, what is he thinking?

As he wakes up extra every morning to help his wife get out of bed, what is he thinking?

As he helps her walk to the shower, only to watch her collapse in her shower chair, what is he thinking?

As she yells out in pain, and being unsuccessful in holding back her tears, what is he thinking?

As she goes to doctor after doctor without any definitive diagnosis, what is he thinking?

As she get discouraged and expresses that she doesn’t want to be a burden, what is he thinking?

As he holds her as she cries in his arms, what is he thinking?

As he kisses her forehead, and reassures her it will all be OK, what is he thinking?

As he hears the doctor say there is no cure and no treatment that seems to be helping, what is he thinking?

Is he sad? Frustrated? Silently happy? Thinking of leaving? Compassionate? Understanding?

We may never know what he really feels, as he holds his emotions in and puts on a jolly, laughing façade. He is the stronghold. He is the provider. He won’t shed tears. He won’t admit defeat. He is her strength, but he is also suffering.

When she can’t get out of bed in the mornings, does he get frustrated or concerned? Does silent anger consume his emotions more, or compassion and helplessness?

Some days she can tell he is upset with her. It is perceived that he thinks she isn’t trying, when in reality, her worst days are the days she’s fighting the hardest.

She’s fighting anger, frustration, and sadness of being trapped in an unhealthy body. She’s fighting her guilt that she has to call into work again; the guilt of not being able to help with the kids; the guilt of not being able to cook, clean, or do anything but sleep.

Some days she feels like she doesn’t want to go on, and her family would be better unhindered without her weighing them down. However, her family is the exact reason she pushes on.

Does he see these feelings in her eyes? Can he tell she feels like that? What is he thinking?

So many times in life she has wondered how she is truly affecting his life. Is he satisfied in life? Is he where he wants to be in life? Is she still just as perfect in his eyes as when they fell in love?

Some days, she just looks at him and tries to read his expression, but to no avail. She may never know, and will forever ask herself… What is he thinking?

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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

Thinkstock photo by Jupiter Images

99
99
TOPICS
JOIN THE CONVERSATION

Why Chronically Ill People May Also Be Chronically Single

109
109

This one’s for the single ladies (or gentlemen) who find themselves not only chronically sick, but chronically single.

I almost titled this post “girl interrupted,” but for me it’s not like I ever had a steady healthy life to interrupt, it’s more like health troubles have been the gremlin to the airplane of my life since my teen years.

Being chronically ill can be incredibly lonely, whether you have close family or not (thankfully I do), and like I have talked about in past posts, most chronically ill people see friends and/or family walk away as illness goes on. When it comes to dating with illness (even if you are somewhat functioning), that doesn’t mean that dating is easy or possible. Healthy people have more avenues to meet people that would fit their criteria for a significant other (I’m not implying that’s a cake walk either), but what about the chronically ill?

Even for the “functioning” chronically ill this may be close to impossible.

I am not bedridden and I can hold a part-time job, but that doesn’t mean every day isn’t a struggle. But “functioning” in what’s required of me means sacrificing everything else, and a lot of the time there’s not much left of me after my basic obligations. What is hard to navigate is that I seem to have a few months every year when things seem pretty good; I have better energy and I can start being social again, being able to exercise some, and feel reintroduced to my own humanity. It’s in these times I think “well maybe I can start to think about finding someone,” but then inevitably things take a dive again and I go back to survival mode: bare basics, just getting by. With every “bad cycle” I have to start saying “no” again to social activities and almost everything outside of bare basics. It’s a yo-yo life.

So how does one date someone like me? In my personal experience I guess they don’t.

Firstly, you would have to actually meet someone. But how if you don’t go out? There are no weeknights out with friends. There are no group social activities. Church attendance may stop. Any weekend activities like hiking or day trips may be too much. And what if you feel like you look and feel like crap and just the stress of even thinking about getting yourself presentable and putting on a good face is too much? It’s so much easier just to sink back into isolation because self-care and living is enough to deal with.

If you are chronically ill it is exhausting being you, but how much more so for those closest to you? I see how close family is affected when the ones they love who are ill, and it’s a horrible strain especially when there’s no end in sight. But these people already know and love us. It takes a long, long time for new friends that come into my life to “get it,” even the ones who are sweet and understanding have a hard time grasping that what are normal activities for them (even their daily routines) are not apart of my life and not possible. It takes people time to see that while your body may look OK from the outside, it serves as your prison of pain and fatigue.

But how would you approach a possible new partner with your life? (We are assuming that somehow you have made it past the first hurdle of actually getting out). It would take a special person to willingly enter into this scenario. But I know they are out there… (bless you, those who love and support your ill partners).

I also don’t feel like I am present for other people the way I want to be. A lot of the time I am exhausted just dealing with me. But I do try; I am an uber-communicator and reach out to others all the time and do the best I can to support others in their struggles and try and be diligent in prayer for my friends and family. But I can’t imagine having a spouse and trying to be there in the capacity that they would need. I fear I may not be able to hold up my end in a household, or relationally.

More than that, when I am going through a hard time physically, I am fairly aware that I am not quite myself mentally or emotionally as well. Whether it be more inflammation on the brain, or toxins or whatever… I am well aware that my ability to rationalize or consistently think clearly is affected. I also lose the creative and motivated sides of myself. So in a very real way, I am not fully myself!

Friends that have known me a while can tell a definite difference between clear-headed me and me on the days things are foggy. You see if you don’t know me it looks like my personality is different. If I ever seem quiet and a little shut down its because I literally am, but it’s not my personality or my choice. So how do you begin a new relationship like this? Well, if you figure it out let me know.

Chronic illness is tough, and maybe it is tougher being single and not having the support of a significant other. But I only know this experience, and maybe the strain of being in a relationship when one partner is ill would/could be a lot more difficult.

We are all individuals and every situation is different. So this is just a shout out to my fellow chronic illness warriors; for now we will just hunker down, survive, take care of ourselves and (for me) serve God the best I can with what limited spoons I have.

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

109
109
TOPICS
JOIN THE CONVERSATION

Remembering Reasons to Keep Fighting in the Darkness of My Illness

150
150

On days with pain, fatigue or other illnesses, life can feel so daunting, so dark. Imagining growing old when you already feel 20 years older is a thought you try to not even think about.

Some days you feel left with nothing but a broken heart held together by pain pills and heating pads.

On those days it’s hard to not feel like a burden on society.

It’s hard to even feel human.

“I just want to be normal” is on repeat in your head. You anticipate the next doctor appointment with such hope. But so often your hopes are cut up with the razor sharp edges of disappointment.

It’s always a wait.

Wait for this flare to pass, wait to see the doctor, wait to try the only treatment they think will work but insurance will fight it until you give up. So you keep waiting.

It’s hard to keep holding on.

I won’t lie, I’ve had those dark moments of despair.

The feeling that it’s never going to go away, not in this life anyway.

The feeling that my world is unraveling before my eyes and I simply can’t stop it.

I have felt like a burden to my family.

I have felt hopeless despite my efforts to hold onto hope so tightly.

Let me tell you how much that all hurts.

It is so easy to lose sight of the beauty that still surrounds you or the fact that hope still remains for the future.

It’s easy to forget the reasons for your fight. Yet in those moments, it’s imperative that you remember your reasons to keep pushing on.

My reasons never fail to tell me how much they love me as I am.

My reasons provide me with butterfly kisses and hand drawn pictures of how they see me.

My reasons tell me they would never ever want a different mommy.

They tell me how much they miss me when they are gone for just a couple of nights.

They are my reasons to keep fighting and I cannot give up now.

Those reasons remind me that there is a light at the end of the tunnel after all, even if another tunnel is right around the corner.

Those reasons help me laugh again and for a moment they help me forget the pain.

For a moment those reasons warm my heart that had become chilled from the bitter cold of never feeling good enough.

They help me get through the thornbushes of life.

They remind me that I simply have to get through it cause when I get to the other side, I might have some wounds from the thorns tearing up my skin but I’ll be stronger from it and maybe I might be able to help others if I don’t give up now.

I might be able to help my very own reasons in the future.

woman with two girls and dog
Three of the reasons I keep pushing on!

If I keep fighting for answers and treatment maybe I’ll save them from walking the same exhausting path I am walking.

So please remember even in your darkest hour, you have reasons to keep going, to keep fighting, to keep breathing.

Nope, it’s not easy and there will straight-up be days that you forget your reasons to keep fighting. But when a new day begins, try to remind yourself of the reasons why you are fighting so damn hard. We all have them, sometimes we just need to remind ourselves what they are.

Make a list of what they are so that on bad days you don’t have to work so hard to see them.

Whatever your reasons are – hold onto them, don’t let go and keep fighting.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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

150
150
TOPICS
JOIN THE CONVERSATION

To the Girl Who Found Herself Again After Chronic Illness

117
117

Dear Girl:

You are a brave soul and a warrior whose strength knows no boundaries. I am so glad you found your spirit and drive once again. There have been so many years you have struggled to find your voice because of chronic disease. But, you did it! You now have that empty hole filled and the constant overcast of clouds moving past you just like they should.

The doctors, friends and family all questioned you somewhere along the way. Your suffering in quiet pain and overwhelming fatigue was ignored many times or shrugged off as being a part of your personality, being difficult and lazy. When you heard those terms and read their facial expressions to your life updates, when you heard snide comments about “feeling badly and feeling sorry” for your situation, your heart must have been so annoyed and fed up with feeling like a pity project. You knew you were just as amazing and talented than those who were questioning your humanness.

You strived to be the best you could at that moment, even if it meant admitting defeat or placing a large pause on a project. You accomplished such great memories and true friends along the way. But, I know it wasn’t all internal soul fire and feature film-like perseverance. It was sometimes very lonely.  It sometimes felt like the world was completely turned against you, you felt alone.

I cannot imagine how it must have felt to have friends slowly disappear from your life because you have to cancel plans again. How it must feel to graduate from college and have your friends automatically begin career paths that you no longer were able to participate in because of your systemic disease. You truly did struggle for some time when life became less fun and your future appeared less promising to others.

I am so proud of you for never giving up, no matter how many jobs you held and then had to resign from because the hours were too grueling, stressful or put you in the hospital because your disease decided to flare up again. I never lost faith in you, I knew you would find yourself once again.

The truth of the matter is, chronic illness can turn even those who say they believe in you, against you.  It can make others who cannot handle the constant stress and uncertainty rely on their insecurities to feel stable, which ended up making you feel badly about who you are and what cards life has dealt you. I know you didn’t mean to be a “Debbie Downer” when you had to go to a friend’s wedding, you were absolutely exhausted. Your joints felt like they were on fire and grabbing a second round of food from the table was like climbing a mountain. You felt like you could not stand up straight to dance with your husband because your back muscles were spasming so tightly it pained you to hold yourself up.

The fact of the matter is, you never gave up. You were able to take a look at yourself and those who surrounded you and pull yourself up again. You, my dear, finally realized that it does not truly matter what anyone says about you, because you know you are an amazing friend, a selfless human being and a warrior.

Once again, you are who you are supposed to be. The beautiful, talented and lively being that was being buried beneath the heaping pile of self-doubt, pain, exhaustion and loneliness. There is a simple beauty in someone who has truly accepted their circumstances and who they are, it just took you some time to open the box, put on the T-shirt, and stand proudly.

Love,
Fate

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

Thinkstock Image By: Grandfailure

117
117
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

6,300
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.