Loving Someone Chronically Ill

Loving Someone Chronically Ill

Whether you are a spouse, a caretaker, a boyfriend, a girlfriend, a significant other, mother, father, sister, or brother or friend- if you are in any way, shape or form responsible for, the care of someone who is chronically ill, chronically in pain: You are our Superhero.

It’s not easy living with someone who is chronically ill or chronically in pain, and I’m not even talking about what may be the everyday sickness that is a part of our lives or the everyday pain. I’m talking about the responsibilities you may have beyond that scope of our world that is your own. I’m talking about your job and your bills and your responsibilities that you may have that don’t include us and that may place extra weight on your shoulders because you try to shield us from any extra stress, not wanting to exacerbate any symptoms knowing that there may be little we can do about any given situation. You are our protectors.

Liza Zoelick

It sometimes can’t be helped that our world is very insular. We are caught in a revolving door of doctor’s appointments, many of us fighting with Social Security disability- trying to get it; we can be exhausted by our own symptoms and feel oppressed and claustrophobic by what our lives have become. Many of us, our only connection to the outside world being social media which is our entertainment, our therapy, our friendships and our shopping experience- all one click away but never giving us that human connection that some of us yearn for, or that connection to nature that some of us crave even more. It can be a hollow existence and one where we become very dependent upon our caretaker who becomes our everything, not even realizing that we’ve essentially become the human version of Dementors to our caretakers. For any of you who haven’t read or seen Harry Potter, Dementors are wraithlike Dark creatures, widely considered to be one of the foulest to inhabit the world. They feed on human happiness and thus generate feelings of depression and despair in any person near them. [harrypotterfandom.com]

It may seem like I’m exaggerating a little bit, but the reality is that our caretakers more often than not, neglect themselves, and how they are feeling and things that are going on in their world, in order to take care of things going on in our world. It may not be taking care of us all the time, but taking care of extensions of us, like our children, which may be a shared thing that is an equal responsibility that becomes more theirs for the time being. It may be housework that is taken on their shoulders even though they are working full time and may be tired. Grocery shopping is something that may fall on them as well as cooking. There are so many small things that you may notice, or you may not notice, that your caretaker may be doing for you to help you. Delegating other people to help you in their absence, such as older children, is a something you may not register. Sometimes caretakers pull children to the side and make sure they understand that the sick parent is unable to do things they once could, and they must pitch in to help. We might only see it as them helping and never put it together that the parent/or caretaker stepped in to make sure that the children knew what was expected so the sick parent was comfortable and wouldn’t have to do things while the usual caretaker was away. These are beautiful acts of kindness that are often unseen because we are so overwhelmed in our illness and pain. But our caretakers don’t expect anything, because that is the nature of a hero.

This is my thank you to all the caretakers out there. The husbands, the wives, the moms and dads, sisters and brothers, daughters, sons and friends who look after and take care of someone they love. This is a thank you for the sleepless nights you spend comforting and for the hours you spend at work afterward. This is a thank you for the patience in listening to our rants, our fears, our tears in not knowing what the future might hold for us; this is a thank you for sitting in silence with us and just holding us, protecting us, so that for a little while we can feel safe. This is a thank you for your optimism, for never letting us let go of the dream of a better tomorrow- a tomorrow without pain, without sickness. Thank you. Thank you for being there. Thank you for being you. And for me, thank you for being my husband.

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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MatthewCuzzort

Thank you for sharing this! I am new to the position of caretaker and appreciate you. My fiance was diagnosed with CRPS/RSDS 28 yrs ago and there are days that she is in so much pain that I feel helpless. All i can do is try to be there for her and help out whenever i can. It breaks my heart on days like this but I am here for her and always will be! I try to stay positive and reassuring and as understanding as i can be but i have to be honest, it gets frustrating because I can’t do anything for her. Holding her and just listening sometimes is all that I can do. Thank you again for your words of appreciation to all of us caregivers your words mean alot to me.

Matthew

Lynne Hall

You are truly blessed. My husband left after 20yrs. He just wanted to be free of the responsibility. He left my 10 year old daughter to care for me.
She is now a mother of 3 herself, but she lives hours from me. I am lucky to have my mom, who has been with me since I first got sick at age 11.
Life was liveable prior to this opoid crisis. Now I don’t know what will happen if I should lose my mom.
I tell her every day I love and appreciate her, and that it should be me taking care of her.
God Bless You!
Best read I’ve had in a long time.

War Veteran: First, thank you for your service. Second, I’m grateful for your son’s service too and can’t express how much I feel for you right now. ALS is a particularly devastating disease that still doesn’t get enough attention, but none of these chronic or long term illnesses do. Third, I’m angry your wife treats you the way she does after everything you’ve been through. I know there’s two sides to a story and there may be blame to lay at your feet too, but the fact is that you are sick and anger and grievances should be put aside. You’ve given a lot to your country. I’m sorry this is the way it’s turned out for you.

Marguerite

I have been blessed by my significant other who has stood by me these past six years and has watched my decline both physically and mentally. He works full time. I don’t have a job. I can’t work in my condition ever again. My entire childhood dream was to be a stay at home mother and housewife. Enjoying the duties of housework grocery shopping cooking healthy dinners with fresh vegetables but I have taken a turn for the worse. He’d offered to do the grocery shopping I just need to give him a list but I cannot even do that I can’t think of anything that I can even make because im not able to stand more than a couple of minutes before the pain drives me to lay down. Just now I burst into tears because I feel like a burden and he told me that I am not a burden that I an loved and needed. I hate that I cannot even do those things that filled me with pride and made me feel like a woman. It’s growing worse everyday though anf my mental health is suffering. The pain is causing me to have thoughts that are so bad that I’m fearful. Everyday is worse than the one before and I only hope now is that I die before I become so miserable that I lash out at those that love me. I read about it all the time. This isn’t living but I am so very grateful for my man. He does understand though ir took a few years for him to really get it but when he did he’s done and will do whatever he can to seethat im kept comfortable anf safe while I slowly suffer ro death.

War veteran

Yes it very hard . And your very lucky! After several deployments t Afghanistan and Iraq, I developed stage 4 cancer , my wife is caring but not like you have , I get yelled at when I wake up yelling my knowing where I am. Or I’m back in one of the many [edit] holes I was deployed to. On top of the sickness I have lost my only son ! He came back from Afghanistan with a form of ALS , I wish you and your husband the best , and your very lucky, to have someone some of us just have people that pour fuel on the fire then try to apologize. That’s what I live with .

Thank you Lisa. And you aren’t alone.There’s an entire army of us out there. We got you.

Thank you Ms. Terri, And I would be more than happy to write about those that are struggling without help that they need.

Rebecca Hollingsworth

Amen.

Mom

Beautiful! So proud of you!

I love your articles. Yes, a great big huge Thank you to those that truly help us. On the other hand, what about the chronic pain patient that takes care of everyone else? I can’t be the only one out here. If anyone has time and cares to, please write an article about us. I have one friend to my name that cares to help. The rest are deaf, dumb and blind and “on purpose.” Sad world we live in.

Claudia Webber

This is so true! Unfortunately, l believe most of us come to expect this as part of the deal and it certainly IS NOT!! They were duped im most cases into believing we would be healthy our entire lives. When the time comes, as it so often oddly, rapidly hits, they are completely unprepared for the physical and mental drain we become on thier lives. While not one of us wishes to be a burden, that is what we are! Suddenly, we are incapable of doing the mundane tasks we always had. Further, (in most cases) we become significantly more needy, and psychologically challenging) as we watch what was our life slip away due to untreated, undertreated, or discharge, something we could have NEVER even imagined in a lifetime! Most of us are stunned, as the government and CDC Guidelines run our lives? Personally, l am still in misbelief? We do live in the USA right? We never thought as citizens this would even be possible! But here we are! God Bless each and every husband, wife or friend for thier understanding! I don’t think we still have come to terms with this reality and with any hope, we won’t havevto for long, as the pendelum is begining to swing back, albeit, slowly!!

Lisa

It’s as if this article was written about my existence, thank you Liza, I feel less alone