Please Don’t Tell Me ‘It Could Be Worse’
Photo by Shutterstock Chronic illness affects everyone differently, so probably better not to judge.
“It could be worse.”
It’s amazing how quickly these four words make my head spin. People living with chronic illness are well aware of the fact that “it could be worse.” I know that I could be in a hospital bed right now. Instead, I’m at home typing on my computer, living to see another day. I know that there are people who have died of terrible illnesses and ones who have died unexpectedly. I know other parts of the world don’t have the healthcare that we do, and I am thankful to have the quality care that I do. I am well aware that it “could be worse.”
The first illness that comes to mind for many people who don’t know of other serious conditions is cancer. The amount of times my condition has been dismissed or belittled because it wasn’t cancer is ignorant. Cancer is often a devastating condition and I have witnessed the effects of it firsthand, but it should not be used to throw in the face of someone with another debilitating condition. It should not be used to justify someone’s thinking that it “could be worse.”
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I want others to know that, yes, my condition could be worse. I am lucky every single day to have two feet on the ground. That fact doesn’t diminish my pain and suffering, and it certainly doesn’t erase my medical conditions. My “worst” shouldn’t be brushed aside. When my suffering is dismissed by others, I start dismissing my health and ignoring how I actually feel.
Hearing “it could be worse” not only makes me feel invalidated, but it also makes me feel remorse for those who do have it worse. My focus drifts away from myself and I am left feeling selfish. I begin to think that my “problems” don’t matter. This way of thinking not only is a punishment to my physical health, but it’s damaging to my mental health. Putting off my pain and suffering because others have it “worse” is not an act of selflessness. It’s an act of self-destruction and can be extremely dangerous.
There are so many people out there who misjudge and misread my suffering because I don’t fit the picture of what “sick” looks like. When I was diagnosed with pulmonary hypertension and other rare diseases, I tried to convince myself that it “wasn’t that bad.” I thought, “At least I didn’t have oxygen” … and then I was put on oxygen. “At least I can still go places and don’t need oxygen as much” … until I passed out after not wearing it while watching a football game. “At least I’m not in the hospital.” … Flash forward to November when I was hospitalized for three months. Any condition can be worse. It makes me anxious to even think about the endless possibilities.
Thinking about “who has it worse” or “how it could be worse” has not done me any good. It has made me neglect my own health. It has made me think that I didn’t deserve the care I was receiving. Those with chronic illness know it could be worse. But, what others need to understand is, it could also be a lot better for us too.
I realized that I have control over defining when I’ve reached my breaking point. My “worst” is solely my own. It doesn’t need comparing, it doesn’t need judging, it doesn’t need belittling. It needs recognition. I feel fortunate to be alive, to be able to stand on my own two feet, to be able to physically type this out and create these words in front of me. I can be fortunate and grateful and still have a right to feel my suffering and pain. I am allowed to say “this is my worst.”
With any chronic illness, instead of saying “it could be worse,” stop and acknowledge someone’s suffering even if it seems “small.” Each person’s pain is their own. It’s real. It’s valid. Every person, no matter their struggle, deserves to feel sympathy, compassion, and deserves to feel heard even though someone out there “has it worse.”
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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
John Alec Briggs
Beautifully written.
Brittany Foster
Thank you so much for your kind words and for taking the time to read this post.
Sherry Evans Berry
Thank you, these three articles were very informative. I do get nervous going to the doctor. I feel like I'm going to wake up and its all going to be a bad dream. Your whole life changes. Especially if you're on high flow oxygen.
Brittany Foster
I agree Sherry! Things can really change in the blink of an eye and we should never minimize all we go through and the courage we possess each day.
KM
Well said. As the mother of a son diagnosed with CTEPH and who has subsequently been fortunate to undergo PTE surgery and is thankfully doing well right now, I get it. I've lost count of how many times relatives and friends have said, " but he doesn't or 'didn't' seem that sick." He now continues daily vigilance as he also suffers Antiphospholipid syndrome, with the threat of more clots always in the background. This young author has captured the experience of pulmonary hypertension and indeed all chronuc illnesses and their impact to our wellbeing very succinctly. Signed a mom and family member first and foremost, but also in my role as a longtime RN.
Brittany Foster
Thank you so much for taking the time to read this column post and I'm so glad that you were able to connect to it. You can share this post with whoever may need to see it. Those who are working in the medical field should always know that anything "could be worse " but it's the individual person that is suffering that needs to be treated and cared for. I'm glad you could find your voice in my writing too. Hope your child is doing okay now and I'm sure you know the importance of taking one day as it comes (sometimes one hour at a time) as cliche as it is. It's how we keep from too much thinking. Xo
Ayse Kora
I hear you Brittany....all the way from Istanbul, Turkey.
Brittany Foster
Wow ! Thank you so much :)
Grateful Patient
So well said. Kudos to you for voicing what many of us feel but never talk about.
Particularly timely for me as well so thank for taking the time to write this. Best of health to you...
Brittany Foster
Thank you so much for your comment ! I'm glad you saw this at a right time for you. :)
Reta Russell-Houghton
Thank you for your comments. Some people think we have to look like death warmed over to be taken as seriously ill. I guess we could always say things like, "Yes, you are so right, slowly being smother to death isn't as bad as cancer."
Other phrases that undermines us are:
But, you don't look sick, and
Oh, your'e too young to have that-----,
Brittany Foster
So true! I hear those type of comments a lot
Cheryl
I don't have enough words to express how much I connect with this article. I'm sending it to a friend who doesn't have PH but has another rare heart condition that's also not well understand. A million thanks for taking the time to write this. xo
Brittany Foster
Thank you so much! I was born with congenital heart disease and also have a lot of rare defects and complications from it that many people don't understand. Thanks for spreading awareness and this message.
Pamela Martin
Your words are so true Brittany so thank you for posting. I'm an elderly lady with acute PH and some days are pretty awful and others bearable. However most days I shower, wash my hair, put on make up and dress well even if I'm not going out or expecting visitors. It's a standard I've set myself but it does lead to family and friends believing I'm well and dismissing my odd comment that I'm very tired and not feeling great. Assumption is if you look good you're feeling great.
I also hate when I confide in someone and they say "oh well, we all have to die of something" or "I could be knocked down by a bus tomorrow". Two statements bound to make me feel better - NOT!!
Brittany Foster
I always love the "anyone could be struck my lightning at any time" and the "we never know when our last days will be". Although this is true, those with chronic illness DO THINK about it more and the reality of illness more than the average person. It's great that you still take the time to try and look your best. Even on my pretty difficult days, it motivates me to actually look good, even if it's just a cute outfit or something!
Brittany Foster
Thank you so much for your comment Pamela. I know how difficult it is to hear things like that from others the "nobody knows when they're going to die". Although that is so true, those of us with chronic illness and life changing disease DO THINK about it more than the average person. It's hard for others to see how we are actually feeling but speaking up about it and spreading awareness truly will end up making a difference in the long run. Thank you for reading my columns.
Paula
I very much appreciate this column. I am an oncology nurse and thought at first my patients had it worse. Well my life has changed dramatically since I was diagnosed 10 months ago. A psychologist friend told me to quit comparing and it's ok to realize this isn't good either. I have said this to others but because it isn't cancer, there is not always understanding. Thank you
Brittany Foster
So true Paula,
Cancer is something that comes to everyone's mind because it is advertised, funded, and has a lot of celebrity recognition. It is OUR jobs to use our voices and spread the same awareness for conditions that are just as limiting and just as damaging and still deserve to be recognized. This is why this column post was so important to me when I wrote it. I knew others would be able to relate and I'm glad that you could relate too. Thank you for taking the time to read what I write :)
rosie
Wow...how I needed to read this today. I have neglected my care because others have it worse. I have felt selfish because others are on oxygen while I can still breathe on my own (albeit with great difficulty) I have often felt almost embarrassed at sharing my chronic diseases because I'm still above ground and still working. And so, my self neglect continued. Not anymore !! Thank you for opening my eyes to my own self worth and the knowledge that it doesnt need it to be any worse for me. My worse is worse enough.
Brittany Foster
Thank you so much for reaching out and for reading my column. I am really touched that this was able to help you see that YOUR worse is bad enough. It's hard to get caught up in comparison. You deserve as much care and compassion as you feel for others.
Francisca Adriana
Maravilhoso seu depoimento. Senti como se eu estivesse escrevendo pelas suas palavras.
Robin Webster
This whole topic really resonates with me, because less than a year after being diagnosed with PH I was then diagnosed with breast cancer. So, been-there, done-that, simultaneously. And yeah, there are so many comparisons. I can't even begin to tell you all the ridiculous things that have been said to me in the past six years. Sometimes it stings. Usually I realize most folks struggle with what to say (and so often botch it miserably.) All of us suffering with chronic illness need to realize it's not a competition, and we'll be much better off if we can commit to letting the thoughtless comments from others who just don't understand bounce right off of us.
Brittany Foster
So true Robin! Everyone has their own storms that they deal with an nobody should be in competition with one another. I feel like this "competition mindset " can be so common in some chronic illness communities when really all we ever need is support and understanding. It's a shame that people have to feel the need to compare and don't give others the time of day because of their definition of "not that bad "
Jenny
Thank you so much for this. I am newly diagnosed and having a hard time communicating with friends and family who have this "it could be worse" / "she's doing it for attention" (huh!?) attitude. I'm learning that I am going to need to surround myself with people that don't have those attitudes, but until I am able to cultivate those relationships (that in itself seems daunting!), the isolation can be hard too. But reading your experience with this is incredibly validating, thank you.
Brittany Foster
Thank you for reading this Jenny. I know that it can feel so hard and frustrating when others make comments like this. Usually it is coming from a good place (sometimes) but it is just ignorance to all that we are going through. When people say these things it can feel very invalidating for us.
Steven Schach
Thank you from a partner of a women who suffers from PH. I need to hear what she's NOT saying.
Brittany Foster
Thank you for your comment Steven. I'm glad that you are reading the posts and I hope that your partner also finds some comfort in knowing that she is not alone in this. It can feel very isolating sometimes.
LauraAnn Matthews
Absolutely on point! Also to be noted even though a lot of us cannot get quantity we still have the right to and deserve quality, whatever that looks like for us as individuals.
I remind my team of doctors of this each and every appointment. I know there is no cure nor do I expect there to be in my lifetime. But that doesn't mean you stop trying. It does not mean you give up or settle simply because it could be worse.
Trust me I am fully aware of where my disease is headed and I don't need reminders of it and I definitely do not need you to brush my feelings aside or belittle my symptoms simply because they are not the worst you have ever seen. I matter too. We matter!
Michael Jones
Hi Brittany, what a great article which I’m sure rings true to many with different forms of chronic illnesses. Last year I had a stroke and from the investigations from this have been diagnosed with left heart disease and pulmonary hypertension . I have also been told by the medical profession that it “ could be worse” which helps you come to terms with it but does belittle the anxiety and fears you have which is a perfectly natural thing to go through. I also asked my consultant a common question of how life shortening is this all likely to be , to which she responded you could be ran over by a bus tomorrow so I’m unable to answer that question. Well we all know you can die from accidents as well as illness but I found this answer flippant and totally unhelpful when deciding whether to bring my retirement and other plans forward . Thank you for writing this and you are definitely not alone in how you feel .
Brittany Foster
I'm sorry you had that experience with your providers being so insensitive. It really makes a difference when they don't try to belittle anything, no matter how big or small the diagnosis is. They really have absolutely no idea about what is going on in our heads. The good ones try to attempt to understand at our level. Really hope you are able to find a more compassionate care team working with you! Wishing you the absolute best!