Chronic Illness: You Don’t Get It Until You Get It

I think one of the hardest challenges of having a chronic illness is being understood.

No matter how loving and supportive and genuinely concerned a person is, they simply cannot understand if they are not ill themselves. Let me just use a few areas of our lives as examples.

Chronic Illness

The Day to Day Decision Process

The whole thought process of a chronically ill person is vastly different from a “healthy” person. Until someone has to process through a million factors before they can make one decision, they have no idea what it’s like.

Going to the grocery store may be super simple to some. — We need milk. I’ll run and get it now.

For those that are chronically ill, there may be 20 or more decisions you need to process before you can walk out your door.

When is my next dose of meds? Do I have time to get there and back before then? How’s my energy level today? Is there anything else I need to do tonight? Because if I run to the store I may not have the energy for tonight’s commitments. Do I have a freezer meal handy because running to the store will suck any energy I have available for making supper? How far in the store do I need to walk to get the item I need? Is someone available to drive me? Wait – I’m exhausted from taking a shower and need to take a nap now. Never mind, we’ll get milk tomorrow.

Advice from Friends and Family

I know people mean well. I’m sure there are sick people out there who are bad at being sick, maybe compared to the parents who are awful parents. People who don’t try anything to help themselves. But I think, for the most part, we are all willing to do, and try, whatever it takes to get better. Odds are we’ve already heard of it, tried it, or know people who have.

The subject came up in a Facebook group I’m part of.  I said I’ve been told every sure fire cure just short of dancing in my backyard with chickens.

The worst part is when you run into that well-meaning person a few months later and they ask if you’ve tried their voodoo treatment only to shake their head shamefully at you as if to say, “you must want to stay this way since you haven’t tried treatment x like I told you to.”

See, what they don’t realize is what seems like a simple thing to them isn’t always something we can do.  A new supplement they suggest might clash with our meds. A new clinical trial being held five states away may not be covered on our insurance. Etc.

I personally don’t like to go into a lot of detail with people.  If I’ve tried their “plan x” I’ll tell them, but that’s usually where I’ll draw the line.  I don’t go into the list of excuses like my meds or insurance, etc. They may just suggest dropping all my meds to try their magic elixir and give me the same shameful glance when I don’t.

Guilt

Most people I know that suffer from a chronic illness also struggle with feelings of guilt. We wish we could do more, be more and enjoy more. If we’re no longer able to work, we have the guilt that we’re not helping to support our families and our health stops us from being able to contribute in other ways at home.

Canceling plans is harder on us than they’ll ever realize. More than anything we want to participate in normal life with those we love. To us, it’s one more event we have to miss out on.

Honestly, binge watching Netflix from a recliner gets old. We’d rather do almost anything else.

Poor Self-Esteem

When you’re not able to do the things you think/wish you should be doing and your not able to participate in things with your family, it tends to take a hit to your self-esteem. You can’t help but wonder if others really believe you and your symptoms. Even if they do believe you, you wonder if they think you use your illness as an excuse sometimes.

Then there’s the lack of outward signs from invisible illnesses – people can’t see you’re sick. They see us as over-weight/underweight, having skin rashes – all the way to looking perfectly “normal” as you’re getting out of your car in a handicapped parking space or grabbing the motorized shopping carts at the grocery store.

We see the sideways glances or the blatant stares. We just don’t have the energy to explain it to them and frankly, we shouldn’t have to.

Grief

They will never understand our grief. The grief that comes from mourning the life we’ve lost and losing the ability to have the things that might have been. Grief of missing out on opportunities with our children. We may have passed through all five stages of the grief process and have finally come to rest at acceptance. But the grief is real nonetheless.

 

What have I missed? What else won’t people get until they get it?

 

 

 

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28 thoughts on “Chronic Illness: You Don’t Get It Until You Get It

  1. I have an invisible illness and look and move fine. When I go somewhere where I know I will be using handicapped facilities and help, like a motorized scooter, I take my cane. Saves a lot of questions and gets me the help I need easier.

  2. Yesterday I was at Kaiser waiting for an appointment and I kept watching all of the people walking effortlessly back and forth and this is what I was thinking exactly what you wrote about. I have had loss recently being told uneven ground is the beach is off limits because I may break the bones in my leg. I moved here to Maui I thought under God’s guidance for my health and to have long walks on the beach. Guess I read that wrong. I love your writing so much.

    • Thanks Lisa – is there a place you can still enjoy the beach views without walking on the shifting sand? Living in Maui you certainly can’t give up the views.

  3. Hi from a new follower 🙂

    love the post. Guilt is definitely the worst -so consuming. I also had cancer and the survival guilt from that is immense -Why do I, a very already sick person get to live while others (with full lives) die? …It’s such a crap world! I’ve realised to stop putting in so much energy in trying to rid it -I can never get rid of it. I just need to accept it, work with it and ignore it… all at the same time.

    Being haunted is simply part of who I am as a person now, and I just need to live with those ghosts 🙂 x

    • Hi Kitty,
      Understand why one person gets ill, passes away, or suffers more than another isn’t something we’ll ever understand. I know we stay here on earth until God says our time is up. By your words and writing you are helping others-that’s a life purpose to embrace and be proud of. 🙂

  4. A very honest and true appraisal. I have been ‘told off’ so many times for ‘not looking disabled’ using disabled parking and toilets etc. My other main difficulty with having a very variable condition is constantly being asked, ‘Are you all better now?’ after an exacerbation as though it’s a cold I have. It makes it hard because you want to be positive and say yes but why can’t some people accept that some people don’t get better?

    • I don’t understand it either Nic. I guess it boils down to the judgements we make on each other without having all the information. The people that truly care will educate themselves enough about your illness to understand it as well as they can. Other than that, you just have to ignore the rest. I know, easier said than done!

  5. I have chickens. Can’t wait to try the ‘dance with chickens cure’! (crossing my fingers lol)

    How about fatigue? How can someone who’s never experienced it understand how crushing it is? They think it means ‘really tired’ which is sort of like thinking chickens are eggs 😉

    • Your right Jayne! Fatigue is the same. It’s hard for someone to understand just how debilitating chronic fatigue can be. We’re not going to get a good nights rest and feel better tomorrow. It changes the way we have to do life.

      • I’m so glad you used taking a shower as an example. Most of my friends and family just don’t understand how the simple task of showering can drain me so severely. Yes, the fatigue is that bad. So bad in fact, that you still don’t feel rested even while lying down.

        I’ve learned to ignore the “proven cures” that come my way. But struggle daily with the guilt, and the lack of self esteem.

        You also hit the nail right on the head with the “planning”. I had to explain 3 times today why I didn’t want to go to Walmart, and still my explanation didn’t fit what they wanted to hear, or how they thought the situation should be handled.

        Missing out on family events, even the little things is getting good harder and harder, and I think is where depression is starting to get the better of me. I’ve had to say no so many times now, it’s to the point where they hardly include me at all anymore. I’m sure everyone thinks I simply don’t wish to be involved. So, I basically sit home alone 99% of the time. My dog has become my very best friend.

        My heart truly goes out to anyone and everyone who is in this situation.

        Thanks for the article. I don’t feel so alone in this after reading.

        • Hi Shannon, thanks for writing.You’re definitely not alone! It is hard and can be very lonely when you don’t have anyone around you that also suffers from a chronic illness. I’ve tried to tell my friends and family that I always want to be invited and I’ll attend every opportunity possible. I want them to know it’s my body that makes the decision, not my desire to be with them.

  6. A wonderfully written piece that is true of so many chronic illness sufferers. For me I think the worst thing is people either saying I look well, asking if I’m better, or like today for example asking what is wrong!? (how she never noticed I had a stick for 3.5 years is beyond me)! Oh well… at least hubby understands when I’ve no spoons! 😀

    • I think, for the most part, people don’t even know what to say or ask. Asking if you’re better truly shows they don’t get it. 😉 I’m so glad you have a husband who is compassionate and understanding! Thanks for stopping by!

  7. Wow, VERY well written and covering most of the things that are the most frustrating to us. I’ve shared this to my page & hopefully my “friends” will read it and understand a bit more of what I go through…it takes years, I’m afraid!!!

    • Some people will understand and have more compassion than others. Some that care deeply enough for us will learn and, at least, believe us when we describe what we’re going through. I hope the post will help some of your friends to understand you better. 🙂

  8. Thank you for this! I am in grief for sure right now and which phase I am in depends on the day. I have such a hard time explaining to my partner what it is like to wake up and not know what type of day it will be pain and fatigue wise, the loss of things I love…running, biking, hiking, heck even sex feels like a chore! 🙂

    • It is hard to say good-bye to the life we once got to participate in. It’s definitely a loss to grieve. Allow yourself to grieve and then try to focus on crafting a new life of purpose!

  9. One thing I realised lately. I’m in a sort of semi spiritual environment where you hear the words love yourself constantly. Focus on being happy. On the power of positive thoughts and the choice to have so through how you look at your situation.
    Lately I was again admitted to hospital with yet another problem escalated to an extreme Because docs wouldn’t listen to me earlier. I was in pain, horrible and to me dangerous headache and a horrible roommate not even letting me close the door (I live in an expat environment so am an immigrant and some locals just don’t like us). I was breaking!
    Most gerona that bothered tried to encourage me and give good advice to calm down. Did I mentioned they messed up my chronic pain meds and I had to discuss meds I’ve taken for ten years with them? Anyways one friend told me I could be as hysterical as I wanted! I didn’t know why that made me feel so much better than all the rest at the time but over the following couple of weeks I worked it out.
    We can’t run away from what we feel in situations like this. But feeling guilt over it because we aren’t calm or positive at that very moment are not going to make us love ourselves any bit more. It’s extremely hard to fully love yourself body included when it hurts every minute, every day, every week for most of your life. Now as much as we know they just don’t understand it we still get swallowed by guilt over not being able to live up to the lovingly meant words of encouragement. That is not self love.
    When my friends told me I could be as hysterical as I wanted -and said friend do know a different form of pain – I felt accepted loved and understood just the way I was at that very moment which in turn afflicted me to give the exact same to myself -that’s why I felt better straight away! The pain didn’t go away but my internal despair eased making it so much easier to deal with the pain.

    • Majbrit,
      Good for you! We deserve to live authentically. There are minutes/hours/days where I have to let grief soak right into me. Otherwise it will deluge the rest of my life.

      I use an app (https://insighttimer.com/) for guided meditation and mindfulness. I’m not a meditator by choice but I do it for my health. Still, it really serves to remind me to experience and accept my emotions as they arise. It is the kindest (most positive :D) thing I can do for me.

      I’m glad you received love and acceptance. Here’s hoping you find more where that came from! especially from yourself.

    • Majbrit, I often say God is strong enough for us to let loose and be hysterical with Him. We all have times where we break under the pressure and you’ve been going through an awful lot. Make sure you focus on taking care of yourself and stay in God’s word! Even if you don’t feel up to reading scripture you can listen to a sermon on youtube or a podcast. Let yourself rest and don’t feel guilty about it! (hugs)

  10. My invisible illness has cost me many jobs. I’ve been forced to resign over and over again. The pay is lower and the I am over qualified for the jobs. I try to explain. I get doctors notes. I feel like a failure. It doesn’t matter how good I am or how much I love it. It only matters that I do and say what they want.

    • I understand Ami, it can be so hard to maintain the career you want when you have a chronic illness. Too many employers aren’t understanding about the symptoms and needs of a chronically ill employee – just concerned with their productivity and “bottom line”. I’m so sorry you’ve had to go through this so many times.

  11. Looking forward to reading & finding support for my “silent illness”. Although I have a big family, most of the time I feel alone.

    • Thanks Denise, so glad you’re here! It can be very lonely with a chronic illness, I hope I’m able to be an encouragement to you. 🙂

  12. This couldn’t have been posted at a better time for me. I had an appointment with my Chronic Pain Doctor yesterday. I have been living with CRPS for 22 years now. I have tried every procedure, every medicine and every treatment. I began taking pain meds a couple years ago, when I had no other choices. Those are not working. My doctor said a few hurtful, frustrating things. For one, was critical of taking so many meds, meds he himself prescribed. In fact, when I came to him two years ago, it was because I wanted to wean off as many of the meds as I could, because they weren’t working. The ironic thing is that he summed up our appointment with three options; adding another anti seizure med, trying a new surgery (first spinal cord stimulator surgery wasn’t enough?), and continuing with the stellate ganglion blocks, which haven’t been helping. When I was downcast after he said this, he asked,”where is that smiling, happy Sue that came in?” When I told him I felt like there was nothing left, he said that I needed biofeedback to learn to live with the pain! Oh yes he did! My husband is my greatest advocate, my dearest friend. But, even he doesn’t truly get it. It’s not his fault, he just can’t without having it himself.

    • Yes, even doctors who work with chronic pain patients daily, are sometimes lacking in their ability to see the bigger picture. Trying so many meds, surgeries, etc is very disheartening. I’m glad you have support from your husband. Like you said, he’s doing all he can to be supportive but it’s still hard for them to completely understand.

  13. Hi Kim,

    You make some very pertinent points in this post.

    It was particularly relevant as I am writing a blog article on a very similar sublect at the moment.

    I discuss working within your limitations as a way to overcome the low self-esteem and feelings of guilt.

    I would have included a link to the article, but it is not yet published.