You know that feeling you experience when you walk into a room and you can’t even begin to remember why you went there? That’s what it feels like to suffer from brain fog due to chronic illness. On a bad day I leave behind a trail of unfinished tasks, deserting them to wander around my apartment for some reason that I simply can’t remember. I usually find my way back to the things I left uncompleted, looking at them with squinty, tired eyes and a haze of confusion. If not, then my husband will surely find strange evidence of my brain fog and fatigue throughout our home.
Experiencing brain fog (or fibro fog) is just one aspect of my chronic illness. There are almost countless other symptoms that have made their way into my life since I was diagnosed with early onset osteoarthritis and fibromyalgia. (Update: I was also diagnosed with lupus in January 2017.) In this post, I’m going to candidly share some of the unfortunate realities of life with chronic pain and illness.
The Unfortunate Realities of Life with Chronic Illness:
Life with chronic illness means that taking care of yourself can be a full time job – one that people won’t understand because it doesn’t come with a salary or 401(k).
It means you occasionally need help to get dressed, even though you’re only 26 years young.
It means learning new phrases like spoon theory (and then learning how to explain them to others).
It means having to instruct your completely undomesticated husband on how to do household chores, such as cleaning the stove top and putting away the laundry, because you can’t often finish them.
Life with multiple chronic illnesses means that a specialist is likely to refuse you as a patient because you have a certain illness (fibromyalgia) despite the fact that you are asking to see him for a different one (osteoarthritis).
It means you can go shopping for groceries and cook a meal, just not on the same day.
Living with chronic pain frequently means suffering from painsomnia – i.e., being unable to sleep because you are in too much pain. It also means being in more pain because you didn’t sleep, thus initiating the painsomnia cycle.
Life with chronic illness means you are targeted by everyone who thinks they have the supplement, diet, or essentially oily treatment that will cure you.
It means that the pride you feel from having a productive day can be suddenly swept away by waves of pain because, actually, you did too much.
You’ll gradually learn that you need to rest before you go to a meeting, because if you wait until after than you’ll need twice as long to recover.
Life as a chronically ill person inevitably leads to unexpected, embarrassing situations that leave you at the bottom of an emotional roller coaster.
It means you might quit your job (or lose it). Then, since you don’t go to work every day like a normal person, you’ll occasionally find yourself defending your daily routine to complete strangers. Because that’s normal.
It means you’ll sell your guitar because you no longer have the grip and dexterity in your fingers to play it.
It means asking your spouse to do way too much for you.
It makes you laugh at inspirational sayings that you now find ridiculous, such as “just do it” or “pain is weakness leaving the body”.
It feels like your chronic illness(es) are trying to rob you of your health, your hobbies, your money (thanks to healthcare expenses and possible loss of income), and even your sanity at times.
It means you have to learn coping methods for something that seems impossible to cope with (especially if you are young).
Related: In the Depths of My Sickness with Lupus.
Life with a chronic illness means that you consider moving into a handicapped accessible house, because that is an unfortunate reality of this new life hell you are living.
It means panicking when you go out by yourself, because you don’t know if you can manage the pain on your own.
It frequently means experiencing feelings of depression or grief over the way of life that you’ve lost.
It means being seen as lazy because you can’t handle physical activity.
Life as a chronically ill person can make you do crazy things like push your limitations when you travel because you desperately want to make the most out of those rare times when you aren’t lying in bed all day.
It means you’ll need two days to recover from an activity that doesn’t bring anyone else pain.
It means reading new books, watching new TV shows, and spending far too much time on social media because those are things you can do from the comfort of your couch or bed.
It means putting yourself first even when friends and family may misunderstand, react poorly, or become angry with you.
Life with chronic illness means shutting the door on things that you would never have stopped doing if you had been given a choice.
It means you have to decide whether to live with the horrible side effects of your new pain medicine or the horrible pain you experience without it. It also means going through the worst withdrawal of your life when you decide you can’t handle said horrible side effects anymore.
It means having kids is even more complicated and difficult.
It means you have to swap out cute flats for supportive sneakers.
It means that you have to be committed to your chronic sex life and find appropriate ways to push past your fatigue and pain.
It means bouncing from one support group to another because you can’t stand all the complaining. But it also means you’ll be incredibly grateful to finally find the one that is right for you.
It means having to rewrite instructions meant for normal people for someone with chronic pain.
Sadly, it often means that you feel hopeless, inconsolable, and lost.
But it also means that you’ve reached a new level of resilience. You’ve become a chronic pain warrior who knows what it’s like to experience a chronic pain win. Your illness has taught you how to prioritize the things and people that really matter to you.
Your periodic breakthroughs will make you remember who you are and why you keep fighting.
The Unfortunate Realities of Life with Chronic Illness. Click To Tweet
Backgrounds for images 1, 3, 4 by Mypik. Photo 2 by Cureton Photography. Check mark icon (photo 3) by Daniel licensed under CC 3.0 BY.
Thank you for sharing this with us. I've been dealing with minor pain issues on and off for the past several years, and although I can't relate to the all-consuming nature of your illness I can relate to the frustration and grief. I also relate a lot to the sex life point, since that's the area of my life that's been affected the most (simply due to the location of my pain). I'm sending as much support as the internet can provide, which I know doesn't count for much, but I'm thinking of you all the same.
Thanks, Danielle. The support of others is one of the best things to have when you’re in pain. I’m sorry to hear about yours, though, and I’m sending my thoughts and well-wishes your way too.
Thanks!
I resonated with much in your post. I am 25, and feel like learning how to navigate the world with my chronic illnesses is like learning to walk again. There are definitely waves of hopelessness, but I always try to push through, acknowledge those feelings but look for the bright sides. I definitely feel like my chronic illnesses have taught me a lot and made me a warrior.
I completely understand – you are definitely a warrior.
Being chronically ill has challenges that so many people don't see. I have had painsomnia the past few nights after not having it for a while and I had forgotten how miserable it was.
You\’re absolutely right. Hope you get to sleep better tonight.
Amen to all of this! As a fellow sufferer of multiple chronic illnesses, I say "gentle hugs" to you.
Thank you Lisa, and you too!
Wow, you nailed it! One of the best blog's I have read on Fibro. Being a sufferer of Fibro along with multiple chronic illnesses/syndromes/diseases, whatever it's called, I try to write blogs myself to be encouraging, to give myself and others reminders of how strong and resilient we are however, I know the strength it takes to write and you have done such a fantastic job at gathering all of these thoughts to paper/web. I'm proud of you and so grateful to have come across this blog. You are amazing, keep on shining! Warm gentle hugs. ~Ani
Thank you so much Ani! Your comment is very encouraging to me and helps it make all that hard work worth it. At least we can connect with and support each other, even though life with chronic illnesses can be so hard.
Yes indeed! It’s always so great to know there's others out there who can relate, and be a source of encouragement and hope. Blessings to you!
Thank you!
Such truth in your words and can totally relate to the struggles you describe. I have nominated you for a 'One Lovely Blog Award' for your wonderful blog which I always look forward to reading as well as seeing all of your incredibly beautiful photographs from your travels. Your blog is such a wonderful inspiration for not letting chronic illness stop you from doing what you want and on those inevitable bad days, it's exactly blogs like this that we need for encouragement. Check out the nomination: https://brainlesionandme.com/2017/02/02/one-lovel…
Wow, I’m so honored that you think so highly of my blog and photography. Thank you so much! This is a great encouragement.
Ava,Adore your blog plus especially adore this snippet. Have shared it over on Chronic Pain SG over on MDJunction.com. Thank you for being such a dynamic plus fabulous blogger! The world needs more people like You! Thanks also for joining us on Chronic Pain SG- a real honour, for sure!! Super gentle super grateful hugs to You, namaste Clara ( username Clarita on MDJunction)
Thank you Clarita. I appreciate you sharing it and I’m glad this could help others.
An honest and relatable reflection. Closing the door on activities and things we love is sad indeed, even if we do find new sources of joy. Wishing you many good days to travel and more!
Thank you, Sheryl.
Thank you so much for participating in our second link up party at The Unbroken Smile. I love your article and I'm sure our readers will love it too. Thanks so much for sharing! ((Gentle Hugs))
Glad to be a part of it, thanks for hosting!
Reading this brought a tear to my eye. Not because I feel sorry for you (even though I really do), but because you basically just explained my life.. I'm 20 years old with Fibromyalgia and Narcolepsy along with a few other health issues, and almost every day is a struggle. I think this is one of the best and most relatable blog posts I have ever read! Sending you spoons.
Hi Lenna, I’m so sorry to hear that you are dealing with similar issues. At the same time, I’m glad that we can connect and understand what each other is going through. Thank you for your kind words!
I just found your blog through Wanderful Wednesday and had to read more about your life – I am so impressed and humbled by how much travelling you do even when you are living with pain and illness. I really hope you continue to travel and as much as you can (and write about it so we can follow you!).
Thank you so much for your heartfelt words and encouragement. I will do my best to keep traveling – I love it so! 🙂
Hope you find it therapeutic writing these wonderful blogs. Anything to occupy the mind, take it off the pain. I tried explaining to my other half long ago that on my good days, I can either walk the dog or go to he grocery store, but not both. He just does not "get it". I love my pup so the cupboard stays pretty bare!
Bonnie, it is certainly therapeutic to write posts like this one – especially when I get responses like yours that let me know I’m not alone! I’m sure your pup is glad that you choose him! 😀