What I Wish People Knew About My Chronic Illness – by Ashley Boynes-Shuck

There are many things that those of us who live with chronic illness have to contend with, and one of those things is the thoughts and opinions of others. While we should pay no mind to what others think of us, I, for one, would be lying if I said I didn’t worry  about what others thought of me and my conditions.

What I wish people knew about chronic illness is that it can be unpredictable. Case in point: on Saturday of this week, I was able to successfully compete in a Kettlebell competition followed by a nice, long bike ride. Last night I took a Zumba class. Today I was in tears, multiple times, due to  stomach discomfort and an absolutely debilitating migraine, and the frustration that comes with these things.

I wish people knew that, while one day, I may be fine, the next day, or next hour, I may not be. That’s something that I’ve gotten used to; unfortunately, it’s something that is hard for many “outsiders” to wrap their heads around.

I may not look sick. I may look healthy and “normal.” But that doesn’t mean I feel that way on the inside. Or — I may look awful and feel great. There’s really no rhyme or reason to any of this, so I’ve learned.

I wish people knew that I didn’t discuss my health issues for pity, sympathy, or attention. I wish people knew that I talk about it because it’s a huge part of my life, whether I want it to be or not. I discuss it to help others who are dealing with the same hurdles. To inform. To educate. To be matter-of-fact. To explain. Not to get pitied, babied, or fawned over. Certainly not to be looked down upon or judged.

I wish people knew that most of us aren’t exaggerating when we describe what we’re feeling. Sure, I’m certain that many people do — but the things that many people think are too absurd or too bad to be true often times are, for us. I wish people knew that with complex autoimmune illnesses come complex symptoms and complications. That it’s an ever-changing journey. That diagnoses we are handed change from time-to-time, as do treatments. It’s always an evolving process.

One thing that is consistent and predictable, though, for me, is this: I will always be doing whatever I can to feel better. I will not rest on my laurels and watch life pass me by. I will do what I can on days I am well. I will not stop trying new supplements and alternative treatments and diets and exercises. I will always be striving to be a better person, with better health. I will always strive to do so with determination and with a smile. I will always try to stay hopeful and positive, even when I have a “down” day — and I will have those days, too. I am human. We all have problems. We all hurt. We are all entitled to get frustrated now and then.

What I wish people knew is that when I am having a down or frustrated day, that I am not giving up. I’m simply expressing my feelings, and I’ll be back on the proverbial horse again soon.

What I wish people knew about chronic illness is that it isn’t easy to deal with — but it also doesn’t have to rob those of us who DO deal with it, of an awesome life. Every day, I am grateful for the many good things I have in my life. In every bad day there is good, even if we must strain ourselves to find it.

If nothing else, I wish people knew that being sick and facing struggles and complications along the way hasn’t changed who I am for the worse — it’s probably changed me for the better. It hasn’t diminished my, or anyone’s, value as a human being. Our worth has remained. It still shines through.

And despite feeling, at times, physically broken, my faith and my strength will not falter.

I wish people knew that chronic illness sucks,  this is true … but it doesn’t have to suck the life out of me, or you, or any of us … and it won’t. Not for me. Through brain surgery and Celiac disease, from eye problems and mild hearing loss,  to rheumatoid arthritis and knee problems, muscle spasms and bone weakness, from chronic migraines and food allergies, to tachycardia, thyroid issues,  and beyond, I’ve persevered.

And what I want people to know when it comes to chronic illness is that I will ALWAYS continue to persevere.

… and you can, too.

What I want you all to know, no matter what you’re dealing with, is that you’re not alone.

And that, my friends, is what I wish people knew about chronic illness.

Be Well,

Ashley Boynes-Shuck

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27 thoughts on “What I Wish People Knew About My Chronic Illness – by Ashley Boynes-Shuck

  1. Very well said, It is such a strange thing, how with a chronic illness, your condition can change by the hour. Ive learned to savor those hours when feeling good. Sounds like you do the same. Thanks for sharing such poignant thoughts with us.

  2. It’s kind of weird though having to wait for those hours. My hubby and I are moving at the end of the month and I started packing two weeks ago. As soon as I knew we had the apartment, I waited for that first “feel pretty ok” time and then went to town. Of course the house looks weird now…partially packed and partially the same, but at least I’m doing my part for the move without being quite dead yet.

  3. AWESOME! Very well written. And as a fellow Celiac and migraine sufferer, I can relate to a lot of the statements. Thanks!

  4. Well said ! just because at 8am you might feel fine , at noon you may feel awful and be in pain etc . Another annoying thing is how much research and fund raising is done for certain diseases but other less known or thought of as “minor ” eg RA…just a little arthritis pain. ( I wish ) The recent disappointing thing for me is that local hospital is closing its water therapy pool as its too expensive to run, the classes have helped me so much.

  5. I couldn’t have said it better myself ! besides changing some illness or personal journeys ofcourse ;) I find it so hard when one day I’m completely fine and feeling as normal as I can possiably feel the next day or hours later un announced I can be on the couch in extreme pain (flu like) and fatigue or suffering from one of my chronic severe migraines and on my way to the hospital for a migraine shot since my at home migraine meds aren’t working or in general just bot feeling well enough to venture out and what most don’t understand is most of the time, everyday we put on our strong happy faces and push through the pain but some days it becomes too much we really did not want to miss out on your special occasion or event or hangout , in all actuality thats all I want to be able to do is just feel normal again and be able to do the simple things with my kids, family, and friends but just know that I will put on my happy face and push through even on the days I’m not feeling so well and wont say a word about it and the days I just need to rest because I don’t have a choice I’m not looking for sympathy or attention I don’t need babied just understanding that I am sick even if I don’t look like it …lupus sle..is my invisible illness

  6. EXCELLENT post! I am living with stage IV Carcinoid / Neurendocrine (NET) Cancer and you have touched on many aspects of what I have shared with others through speaking/teaching, as well as writing. You are well-spoken/-written and you have just gained a follower.

  7. Love what you wrote, that is exactly how I feel, and as I was reading this I teared up, because it is so true what you have written, I too…of course suffer from an invisible disease, FMS,.P.A. and a few other autoimmune diseases….I wish that everyone would educate themselves,(friends,family), The more knowledge…the better understanding!!! Thanks!! xo

  8. Pingback: Vulnerability and Keeping It Real | Beyond Life's Challenges

  9. I always tell people “I’ll see how I feel” I hate that I can’t RSVP to events because I don’t know how I will be! I was in my wheelchair the other day and I had people say to me “What’s wrong?” then I have to explain to them for the hundreth time: Some days I feel good and can walk, other days I am weak and in so much pain walking bring tears! I have learned to not ever say “what if?’ anymore, I will not mourn what is lost, but will push forward with the celebratory moments when I do feel good:)

  10. Beautifully written. I have Anklyosing Spondylitis. You thoughts, comments and feelings are shared. Thank you for writing them down. You have a talent to be able to say it in a way I never could. God bless You !

  11. You hit the nail right on the head as far as those of us that live with chronic illness/pain. No two days are alike, and the face we sometimes have to put on for others is generally nothing like we are feeling on the inside. With Fibro, OA, Depression, dry skin and eyes, no saliva to swallow your food with, stiffness in every joint of your body, and fighting to get enough sleep to get through whatever the next day will bring, it’s a daily struggle to appear normal to the outside world. Thank you for bring a face to chronic illness/pain.

  12. I have lost whole sections of my family because they don’t believe me. They see me on a good day then get mad at me if I have a bad day. Finally decided to just do without friends and family that don’t attempt to understand. Thanks for this.

  13. I wish I didn’t have any problems to hide but I’ve found over a lifetime it’s really all you can do about it. As I reach my “golden years” they are more difficult to hide, more significant both in their severity and their appearance. It’s part of the load you have to deal with as you do the load itself. Try not to focus on it. When people know about it, it doesn’t really make it any better.
    Their typical reaction is “Oh, I always knew there was something about that person”.
    “Do not judge another until you have walked a mile in his shoes”. So true, but it doesn’t change a thing.

  14. Thanks so much for your article. I have fibromyalgia and can certainly relate to what you say. It is so frustrating to try to explain to people your condition and they still don’t get it.

  15. Very nicely written. I can totally relate to this, as I suffer from several invisible chronic illnesses and chronic pain. I’ve been pretty much bedridden for the past 8 weeks, except for doctor appointments and physical therapy. I usually have the mindset you have just written about, but after so long with no relief, I’m really struggling today. Thank you, I needed this reminder today.

  16. Ashely, I admire you for your powerful and expressive writing. I could not have written this better myself. I am living with severe crohn´s disease for 25 years. Other people´s ignorance has caused me a lot of emotional pain over the years. Judgements are made by people without really knowing the facts. However, this journey has also helped me see the world in a different way. I am a better person for it. It makes me stronger, more determined and accepting of my limitations. I hope others are able to find inner peace amongst the times of darkness. Your post is a reminder to us that we are not alone. Thank you.

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