Why I Don’t Believe ANYTHING is Possible with Chronic Illness: False Hope and Empty Promises
While I work hard to provide you with accurate and up-to-date information at the time of publishing, as time passes some information may no longer be relevant or accurate. The field of medicine is a constantly evolving science and art. Thankfully! In 1951 a woman was given a lobotomy to treat her ulcerative colitis. That wasn't even that long ago!
False Hope and Empty Promises About Life with Chronic Illness Made by People Who Can't See Past Their Own Experience of It
Just going to be honest from the start and say that I can’t stand it when I see other advocates tell patients things like, anything is possible with *insert name of chronic illness* if you just…
In my opinion it shows a complete lack of awareness of what life with a chronic illness is like beyond their own experience of it. It’s basically saying, if I can do these things then you can do them, too! I would never say such things because one or more of you is going to be reading that from the hospital laying there in a very bad
If I can do it, you can do it!
situation wondering where my brain flew off to.
Those of us living with a chronic illness are all so different, even amongst people diagnosed with the same disease. There are those who suffer for however long they suffer but then have a successful surgery or find a medication that works well for them and they take off and do well from that point on. Those people are inspiring and we need them to show us that things can get better. There are those in remission and those who are not. There are those whose disease falls on the severe end of the spectrum and those living with very mild disease.
In the IBD community I see many patients and patient advocates using phrases that imply that everything is possible with Crohn’s and UC if you just _____________. I know that most of the time those people are just trying to provide hope and inspiration to others but it can also be insulting to the people who have tried their hardest, remained positive, took their medications religiously, perfectly followed their doctors instructions, and yet still have a very severe case of IBD that barely responds to the treatments currently available.
Your Experience of IBD is Not Mine and Mine is Not Yours
There are so many people out there who have severe Crohn’s or UC that it’s not fair to expect that they can do the same things as people who have been less affected by the disease. There are people with IBD who also have other severe health conditions and that adds to their situation. There are those who were diagnosed before biologics were being used so they had to rely on prednisone at high doses for long periods of time and/or they have had many surgeries. There are people who were born with early onset IBD that have a monogenic form of it that tends to be more severe. There are people with very severe cases of stricturing or penetrating Crohn’s disease that has been difficult to get under control. On and on I can go about the different ways in which IBD can affect people
I think this video is hilarious and awesome for highlighting just how stupid the “you can do anything” mentality is. It definitely puts my thoughts on it together very well and in a very funny way.
and this is why it is upsetting to me when I see people talking about their own experience of IBD and then instructing others on how to live with it and assuming the result should be the same.
Why I never use the phrase “Anything is possible with...”
I will beat ____________.
I didn’t let ___________ disease get in the way of accomplishing my goals.
_________________ can’t stop me from achieving everything I set out to do.
How I overcame my chronic illness and ___________.
If you just put your mind to it you can _____________ with _________________ disease.
I understand why people use phrases like the ones above and I appreciate the sentiment behind them. I think when people say stuff like this it’s because they want to offer others hope and that is a beautiful thing. I just have a problem with such a blanket statement being applied to an entire community of the same illness. It seems that the advocates who say things like this are those that have milder disease or those that have had a response to medication or surgery that has allowed them the health they have. There are all sorts of reasons for doing well just as there are all sorts of reasons for doing poorly. Lumping everyone into the same category and telling them they can achieve all their goals disregards the patients who have very difficult experiences of their illness and it isolates them from their own community.
A while back I listened to an IBD advocate speak to a large group of Crohn’s and UC patients about school and work with inflammatory bowel disease. The entire hour they passionately explained how to complete college and land your dream job just like they did. There was so much conviction in the way that this person spoke that it was as though every patient, no matter their circumstance, would be able to do what they did, exactly how they did it, and live the same life that they have.
The problem was they never considered situations that were outside of their own experiences of life with inflammatory bowel disease. This person had never been hospitalized their entire life until right after
graduation so they never had to handle all that comes with hospitalizations and surgeries while trying to attend school. They were not even diagnosed with IBD until their last year in school, and they have had a relatively mild case of IBD that is managed well with the treatment they are on which keeps them in remission.
All of that is wonderful but it is irresponsible as an advocate to not consider circumstances outside of your own experiences when you’re speaking to a large group of patients and trying to teach them about something. I still have no idea why this person was chosen to teach patients about getting through school with IBD but that isn’t the point of this post sooooo…
How could I ever say to a large group of people who have chronic illness that they can do ANYTHING they want in life if they just believe/try hard enough/etc? How can I tell EVERYONE who has a chronic illness that their disease can’t hold them back? That everything they want out of life is possible?
Would I tell a patient with severe mitochondrial disease that they can do ANYTHING? Nope. Would I tell someone with terminal cancer that they can beat it if they want to if they just believe it’s possible? Jeebus H absolutely not! Would I tell a paraplegic that they will walk again one day if they put their mind to it? No because I’m not an idiot but people say stuff like this all the time. It’s so weird to me that a lot of it comes from patient advocates. All of it is insulting, empty, and centered around blaming the patient for how unwell they are.
My experiences of chronic illess: Knocked down x times but i always get up again
My experience of chronic illness has felt like the journey of the phoenix who rises from the ashes again and again. I have had to drop out of school and stop working so many times and I’ve hated it every single time. I’d get very sick and then the life that I built for myself goes down in flames. I get better again, rise from the ashes and go back to work, go back to school, put my life back together until once again everything goes down in flames.
I have had to put the dreams I’ve had for my life on hold and I’ve had to let go of some of them. My experience with the chronic illnesses that I have is different than those who tell everyone else that whatever they want in life is theirs because that’s how it happened
for them. Every time I get on my feet I am knocked back down and I stand up again with more debt, more problems to sort through, and less people standing by me. Whew! That sounded like a bunch of negativity y’all! The thing is, it’s not coming from a negative place inside of me. I don’t feel negative at all but rather empowered.
My illnesses have been on the very severe side of things and no matter how hard I try that is just the way it is. I CAN’T do anything I want to do with my health the way that it is currently. That doesn’t mean that I don’t enjoy my life or that I can’t accept it. Actually a huge part of living my best life with chronic illness has been learning to accept it and pursue goals that were more realistic for my life as it is and not how I wish it was.
When I see others in the community posting about the marathons they run or the things they have accomplished sometimes I still think to myself, what’s wrong with me? Why can’t I do those things? To be honest I sometimes laugh out loud at the ‘anything is possible with chronic illness’ statements out there. To tell an entire sick community that they can do anything they want if they just “prepare” for it is ridiculous to me. I feel bad for the patients who are really sick right now that a lot of those statements fall short for. That is the last thing I want for you guys to feel here because I know what that feels like so I try to keep this site realistic and show both sides: positive and negative.
I may not be able to do everything I want to do but I AM kicking butt because I get up every time my health knocks me down. Because through the majority of it all I’ve managed to keep a mostly positive attitude. I keep trying, I keep going, and that’s all I can ask of myself.
I’m never going to tell you that everything will be possible, but I will tell you that...
If I could achieve anything I set my mind to I’d have a billion dollars right now, perfect teeth, and no wrinkles. I don’t think anything is possible but I do not believe in giving up. I encourage you to be resilient and I think we should all try our best and still set out to reach for the goals that we have. We also need to be flexible in our thinking and know that with chronic illness it can get in the way and that we might need to re-arrange our goals or set new ones.
I won’t tell you that your story will be like mine or that my story will be like yours. I’m not going to say everything is possible or if I can do it so can you. I will try and encourage you though. I will try to empower you and inspire you. What I will tell you is that it’s all about where you are mentally. Physically you may be weak but mentally you can be strong. I won’t let this consume who I am to the point where I give up or I don’t try or I can’t see the positives in life. That’s all I can do.
This post was edited on 7/24/2019 for appearance, grammar, and clarity, as I transfer my site from Tumblr to WordPress and rebrand Inflamed & Untamed.