What It's Like Having a 'Chronic Illness Career'

When we think of chronic disease, we wouldn’t usually have happy thoughts or find ourselves looking forward to a bright future.

Fear, horror, uncertainty and grief are generally the normal response. However, the reality of living a chronic illness life can be quite liberating, as I’ve surprisingly found over the past seven years.

One of the wonderful things chronic disease has brought into my life is finding new networks and friends in the chronic illness and blogging communities globally.

To a large degree, my patient advocacy work and writing career all started when my first article was published by the Mighty in 2017.

Before becoming disabled and unable to work, I had no idea about blogging or online support forums. I never even had a Facebook account. I always wanted to write a book but had no idea what to write about.

Fast forward to today and I am now fully entrenched in a whole new world of blogging, social media, networking groups and online support groups, either as an active member or as an administrator/owner. My medical “retirement” has turned into a full time job managing my Twitter, Pinterest, Instagram, Facebook pages linked to my blog, my personal Facebook account, writing for the Mighty and other publications.

Added to the above is a dream come true… I have signed a book contract, written my book, and my manuscript is finished and ready for editing. Before long I will be a published author and my memoirs will be brought to life on beautiful printed pages! I just can’t believe it!

I quite literally have a “chronic illness career.”

It’s A Full Time Job!

All of a sudden my sedentary, chronically-diseased life, looks more like it did when I was working full time in an executive management role. I’m now the CEO, CFO, leader, manager and worker, all rolled into one.

We can so easily underestimate what’s involved in patient advocacy work, no matter what your area of focus. From morning ’til night I am involved in some way in an online/writing activity.

I love it. There is no denying it. I love sharing, learning and supporting. I love working and I love the chronic illness career I’ve been blessed to successfully create. However, even when you enjoy something there is still the danger of overload and burnout.

I have to constantly rest my body, because of my physical disability, but what about my mind? Do I rest it enough? I asked myself this question today and very honestly answered, “No, I don’t.”

I wonder how many others in the chronic illness community who are bloggers/writers, administrators or active members of support groups, are feeling like their minds are just a little too full of chatter? I wonder how many with chronic illness careers think about having a proper weekend each week?

It’s OK To Switch Off

As I quietly mused upon my response of not giving my mind a rest, it all became so clear.

It’s OK to switch off. It’s OK to have a chronic illness career weekend. In fact to do so will mean you will add more value to conversations the following day on support forums or Zoom meetings. You’ll approach situations with better clarity and insight.

It’s even OK not to blog or write for a week or two. A break from writing allows time for creativity to take flight.

It’s OK to step aside from forums you perhaps feel are not right for you anymore, or they have just served their purpose. We grow and our needs change over time. A new group with a different focus may be required.

It’s OK to say “no” if asked to be involved in something which would overstretch you. It’s OK to commit to one or two things solely and give them your all. In fact it’s probably a good idea, especially given you are also likely working full time, managing your own health… a whole different story!

Switch off your phone, tablet and laptop. Listen to the quietness envelope you. Take a deep breath and just enjoy the moment when you let your mind rest from your chronic illness career world.

Ahhh…it’s so refreshing. Peace is a wonderful thing.

Give Yourself Permission

I’m going to make some changes to how I work. I love my forum and it’s my number one priority. I do, though, need a regular weekend and I’m going to take it. No set days as I want the freedom to go with the flow a little, after all I’m “technically” medically retired, so surely the regimented lifestyle should be a thing of the past.

I want more time to quietly write. Writing helps me relax. For me it is a reflective process, but when there is too much filling my mind, it’s hard to listen to any inspirational ideas lurking in the recesses of my brain. Thinking time is essential for creativity to emerge and writers block to be broken.

So I shall still happily immerse myself in the chatter of the chronic illness networks and blogging communities I love. However, I will now also be making every effort to ensure I take time out each week, to clear my mind and enjoy some peace and quiet.

If you feel like your blogging, writing, online focus, patient advocacy work etc. is overwhelming you, I’d encourage you to switch off regularly. Think about how you can better manage your time and involvement in social media, networks and volunteer activities. Assess what’s working for you. Is it still relevant to your needs? Do you need to make changes? Is all you are doing adversely affecting your health and well-being?

“By the seventh day God had finished the work he had been doing; so on the seventh day he rested from all his work.”(Genesis 2 v 2 NIV)

Give yourself permission to seek some quiet space. It has been such a refreshing experience to have a reality check and determine to make changes to all my patient advocacy commitments. I know it will take a little while to get my chronic illness work life balanced, but I’m on the right track by identifying that changes are needed. I know I will be more effective and more connected and focused on the work I love, if I give myself permission to take a step back.

Taking one or two days off a week is absolutely the right thing to do. We all need a weekend. We all need downtime. If you are feeling overwhelmed with your own workload, created by your chronic illness career, I hope I’ve encouraged you to acknowledge you are actually working and you do need to have time off each week…just like you would if you were employed in the “abled” workforce.

It makes so much sense when you think about it this way, doesn’t it? Whatever days become your weekend, I’m going to end by simply saying; “Have a great weekend.”