The Disappointments of Chronic Illness


Chronic illness is defined as being long lasting, over time, consistent. For those of us with autoimmune illnesses that are chronic, that definition includes incurable and unpredictable. This means that we are always sick, but the symptoms come and go. One day our disease may be manageable, or asleep, and the next it may be out full force. We never know from one day to the next how we are going to feel, and this makes it very hard to make plans in advance, much less to keep them consistently. For many people with chronic illnesses, this is the biggest disappointment.

By way of example, I can tell you my story. You see, I have been chronically ill for 21 years. The treatments for my illness caused weakness in my bones and I sustained two fractured vertebrae in 2014 and 2015. In November of 2016, my disease came out of remission and has only recently become manageable again. So basically, I have been struggling since August of 2014 to be pain free and as active as possible.

So, because of all this, and the fact that I don’t want to become a sedentary person until my disease makes it a necessity, I decided to find some challenges in my life. I started small. I invested in the ability to research my family history. Challenging my brain is huge on days when I can’t be up and around. I also found a volunteer position that I am physically able to do, as I help at a an animal rescue center. I work with cats and kittens, as I’m not strong enough to deal with the dogs. (At adoption events, my job is literally to cuddle frightened kittens. Seriously! I know right?!) That takes care of mental exercise and feeling needed.

The color run – or for me, the color walk. It’s a 5k event with lots of brightly colored powder and unicorns. Apparently. I’m not sure where the unicorns come into play, but I’ve heard them mentioned. Anyway, a friend of mine sent me an invite to sign up on her team. And I did. Spur of the moment. I’m not even sure why as I don’t think I’ve walked more than a mile since my injuries. But sometimes, I think we all get sick of being sick. Yes, it’s part of who we are now and we all know the idea of not letting it define us, but the reality is it’s always there. And I don’t want it to be. So I signed up to walk.

The problem is, I can never be sure I will actually be able to do anything. Even walk. And, the weather where I live decided not to cooperate enough for me to get outside to practice. I walked indoors whenever I could but I didn’t know how far I was going. And to be honest, I didn’t feel the support I wanted to from my family. I get that they were concerned for my health, but I really wanted to do this. As afraid as I was of not being able to complete the entire walk, I really wanted to try. I prepared for the back pain, the migraines, the dehydration, the sun exposure, the swelling, the joint pain, the breathing issues – all effects of my autoimmune disease. The one thing I didn’t prepare for was the thing I should have seen coming.

Yup. I got sick. I am writing this with a fever, stuffed up, unable to breathe, swollen, joints hurting, and weaker than weak. Two days to go before the walk. And it’s not just the virus. I’m disappointed. It seems I’m always disappointed. I want to participate but I can’t count the number of times this has happened. Of course I go on. We all go on. We have to. But to say we don’t get disappointed is an understatement. Sometimes we get downright depressed. Sometimes all we want is to be able to live like we used to, making plans and keeping them. Doing all the things we want to do because we want to, when we want to, where we want to, and in whatever weather is out there without a bag of medicine.

Oh, and without being afraid of people sneezing on us…

Now will someone please explain the unicorns to me??

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

Thinkstock Image By: Hemera Technologies


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


Related to Chronic Illness

woman leaning out a car window on a road trip with the sun behind her

10 Ways You Can Travel 'New Roads' Without Leaving Home

When I feel up to it, going on a weekend drive is one of my favorite sunshine activities. Supported by the Zofran in my bag, anti-inflammatories, pureed snack packs and so much water, my dad and I drove to see my brother at his school this past Sunday. OK, so I only decided to go after finally [...]
Oil painting of a house, with blue shutters and white chairs on porch.

When Your Chronic Illness Leaves You Housebound

Life can hold  many wonderful adventures. Travel, work, days out, drives in the countryside, eating at wonderful restaurants and cafes, visits to family and friends. The list is endless. The opportunities to broaden your horizons are plentiful. What if  you can’t do any of those things? What if you are housebound? What if your body [...]
woman with long flowing colorful hair

The Beauty of Feeling Incomplete as a Person With Chronic Illness

I received some great news earlier this week – I’ve been accepted by a university where I will complete my undergraduate degree. Transferring from my community college is a big deal, as there were (are) abundant obstacles to overcome. This victory comes after several withdrawals from courses and a particularly difficult Fall 2016 semester. Since [...]
watercolor image of a woman with dark makeup

Dear Chronically Ill Young Women: How to Be Assertive in a Medical Space

A few days ago, I ran a poll on Twitter, asking my followers what they would like me to do a “thread” on. I included four options: 1) How to deal with blood draws, 2) How to deal with an IV placement, 3) How to be assertive with your doctor and 4) How to manage [...]