When Your Life With Chronic Illness Is Lived in a Bubble of Frustration


As a chronically ill person, a sufferer of rheumatoid arthritis (RA) or whatever way you want to describe me, my life is quite often lived in a bubble of frustration.

Frustration at being ill, frustration when I can’t do something, frustration having to cancel plans, frustration at not being understood or believed and frustration at feeling constantly frustrated. Ironic, I know.

Since I was 15, I have been in this never-ending loop of frustration and sometimes I think frustration is one of the most infuriating emotions. It can be cured with a cup of tea and chocolate like sadness, or a huge bellowing scream like anger. It’s just there, following you around your daily life, hanging over you, and in truth it’s exhausting.

This blog is about trying to see the positives, realizing things could be much worse, and don’t let your limits stop you, and I still believe all of that. However, it’s also important to be honest and realize that life with RA (and other chronic illnesses, too) is not a walk in the park — far from it and sometimes you have to let yourself be honest, even if people roll their eyes, or call you a whiner or think you’re being dramatic.

What if I told you I know you’re not being dramatic? I know it hurts and I know the frustration of knowing it will never not hurt is heartbreakingly infuriating. I also know that while you have days like that, when all you can see is a big black cloud following you around, there will also be times when you will laugh so hard you will forget about the pain, even just for a second. There will be times you are so overwhelmed by love, maybe from a parent, a friend or the children in your life that the pain will melt away, if even just for a few moments.

There will be times you will be so proud of yourself, your partner or your child that the pain will not matter, so much so that it’s barely there.

They may only be moments, minutes or hours, but they are precious and they will come. These are the moments you have to think about when the idea of getting out of bed is all too much. These are the moments you have to think about when making a cup of tea feels like climbing a mountain. These are the moments you have to think of when existing has become a struggle.

To those reading this without a chronic illness, I probably sound melodramatic and like I am just exaggerating. But anyone who has ever lived with or is still suffering with chronic pain will know that life with a chronic illness means just existing can be a struggle. Just sitting on your bed can be painful, breathing can be painful, existing can be just painful. And we laugh and smile and joke because it makes existing that bit easier, and we go to our rooms or hide in corners to cry because we are embarrassed, and besides, we don’t want to drag others down.

And we can be happy and we can feel content and we can feel sadness that has absolutely nothing to do with our pain, just like everyone else can. We are human and we hurt in other ways, but we can also feel total happiness, and it’s those moments where we feel vaguely normal that we hold on to, which gets us through the rest of the time when we are struggling with just being, living, existing.

Follow this journey on The Girl With the Old Lady Bones.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Lead photo by Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Rheumatoid Arthritis

When People Say, ‘At Least It’s Just Rheumatoid Arthritis'

If you’re living with rheumatoid arthritis (RA), I’m sure you’ve heard about Glenn Frey dying from “complications from rheumatoid arthritis, ulcerative colitis and pneumonia.” I’ve personally already had several people tell me they were unaware you could die from rheumatoid arthritis. It’s difficult for people to imagine in this day and age that we don’t [...]

My 5 Favorite Products for Reducing Rheumatoid Arthritis Pain

Oh, online shopping. You are the absolute best, especially for someone with chronic illness and small children at home. Most days I have to tell myself not to open my shopping apps because it will not end well. My addiction to online shopping has some benefits. I have found some items that have come in super [...]

If Pharma Commercials Had Honest ‘Before’ and ‘After’ Photos

The pharmaceutical companies think they know their target audiences. For the most part, they probably do, if the waiting room at my rheumatologist is any indication. However, they kind of overestimate the “after” effect of medications on those of us with severe rheumatoid arthritis (RA). I made my sister take a staged pic of me [...]

A Day in the Life of Someone With Rheumatoid Arthritis

Contrary to what people think, rheumatoid arthritis (RA) can occur in anyone at any age. As a 19-year-old living with this autoimmune disease, as well as fibromyalgia, I’ve nearly heard it all when I tell people I live with RA. Despite what some people may think, no cure for RA exists. While it can be [...]