If someone were to ask me to describe what it’s like to live with a chronic illness, I honestly wouldn’t know what to say. Perhaps it’s the expectation of living a normal life and remaining “active” with drained out batteries. The fear of being bedridden or dependent on other people, the guilt of letting people down, the pain of feeling left behind and missing out on things, and the unpredictability of the illness itself. In addition, it’s the constant struggle to educate and create awareness amongst family, friends, and co-workers, all the while hearing insensitive things since nobody has any idea how disabling it can be.
Related: 5 Mistakes You’re Making When Speaking to Someone With a Chronic Illness
To be honest, nothing I say will actually do justice to what it’s like, however, there are certain things I can tell you for sure. They are:
- Our lives are very different from your lives.
How? You may ask! In addition to all the regular challenges that are part of adulthood, we also have to worry about pain, fatigue, nausea, migraines, physical limitations, brain fog, sleep difficulties, medications, a ton of appointments – with the doctors’, chiropractor, massage therapist, physiotherapist, acupuncture – canceled plans, and most importantly, trying to keep up with people’s expectations of us. - It’s not fair to have the same expectations from us as you would from a perfectly healthy person.
This is a never-ending struggle! Most people tend to forget that a chronic illness is something you have to deal with every day of your life. So just because you see a smile on our faces doesn’t mean we aren’t in pain. And that certainly doesn’t make it okay for you to have the same level of expectations from us as you would from a perfectly healthy person. Think about the time you empathized with someone who got sick just for a few days. Didn’t you cut them some slack? Now imagine being sick for weeks, and months, and years. Don’t you think we deserve the same? - If you see us “enjoying” ourselves, it doesn’t mean we aren’t sick.
You see us put up a picture on Instagram. We are laughing and having the time of our lives. You automatically start judging and think to yourself, “She looks absolutely fine there. It doesn’t seem like she is in any kind of pain. In fact, she is out and about, having fun! Yet she has no time for me.” But did you know that I had to save my energy all week long just to go out that one night? Or that it took a lot of convincing from my family and everything in me to drag myself outside in an effort to feel better? And that the entire time I was out, I was trying super hard to forget about the physical and emotional pain I was in? Can a picture ever tell you the struggles behind that moment? Definitely not!
- We pay the price for it each time.
We absolutely love catching up with you; those long phone calls and all our time together, but it can be very draining on us. Unfortunately, we always have to pay a price for all the fun we have. Every time you see us dancing it up at that party or spending an entire day outside, you will find us trying to recuperate for the next few days. We spend every single day of our lives making decisions on what we are able to use our energy on that day. Every single interaction takes from the very limited amount of energy we have. - Fatigue is different than being tired.
I think fatigue is harder for healthy people to understand than pain because everyone has felt pain at some point in their lives, even if it’s not as bad as our pain. However, healthy people can’t wrap their heads around what it feels like to be exhausted even after 12 hours of sleep. Or feeling the need to take a nap just after freshening up and having breakfast. But hey, thanks to fatigue, it is totally possible for us to be way more exhausted than you even if you have had a 5 day work week and we have only had a 2 day work week. Or if you’ve been having super long days in comparison to our super short days! - We are going to live with this for the rest of our lives.
There’s no “cure” for our illness. This is going to be our life for the rest of our days. If you decide to stick around, make sure you’re able to handle being there for us through our ups and downs. Unfortunately, cancellations and disappearances may be part and parcel of being friends with us. That actually has nothing to do with you and everything to do with our health condition! We understand if it’s too much for you to handle but please understand that it’s not fair for you to take it personally and expect us to explain ourselves each time.
- We don’t want to sound like we are complaining.
Being tired or not getting enough sleep the night before can easily come off as “complaining.” This is the reason why most chronic illness warriors aren’t vocal about their struggles. We would rather keep things to ourselves than have people think that. But please keep in mind that there is a huge difference between feeling that way once in a while or feeling like that every day of your life. - We just want acceptance.
Honestly, we just want to be heard! We want people to stop pretending like there is nothing wrong with us, to recognize our challenges, listen to us when we feel the need to vent and maybe just give us a hug at the end of it all!
These are 8 things I’ve thought about and wished I could tell my own family and friends but have never been able to. Maybe because my chronic illness never becomes the topic of conversation. Maybe because I’m used to keeping that part of my life to myself, maybe because I’m used to suffering in silence or maybe because I just don’t have the energy to educate. But it feels good to finally get it off my chest!
If you have a chronic illness, what do you want to tell your family and friends about your life? Let me know in the comments below!
Love and spoons,
Sara
Thank you for putting into words exactly how I feel. I too get the “you look good” comments but, most people don’t have any idea of how much it costs us to go out with our families. I want my family to understand that I don’t want to talk about my pain or fatigue every day; it seems like complaining.
Hi Denise!
I’m happy to hear you were able to resonate =) If you find that you’re having a hard time explaining how you feel to your own family and friends, maybe use this post as a starting point to start a conversation. But keep in mind, just because these conversations aren’t easy, doesn’t mean we shouldn’t have them!
Much love,
Sara
Hi Sara,
Just wanted to let you know that this article was a readers’ fav on my Twitter feed this week, and I’ve listed it here:
https://www.achronicvoice.com/2019/08/23/issue-175-finding-your-tribe/
Keep up the great work! 🙂
How sweet – thank you so much Sheryl! I really appreciate it =)
I enjoyed the blog and comments posted on here. Very exact and true of most of us with kidney disease . After a transplant people think you are all better and back to normal. They don’t understand how the medicine can affect you plus age. I plan and bank my energy due to daily fatigue. Difficult for people to understand this.
Thank you so much Joyce =) So happy you found it relatable!
I totally agree with everything you’ve said and the comments in this article. I’ve lived with kidney disease since the age of 13 and am now 45 going on 46 next month. I’ve had two transplants and been on PD in the last 10 years. For most of my life, I’ve dealt with these issues. People really don’t understand how you feel. You may look great and enjoy yourself sometimes . Most times I’m very tired. I appreciate this article and reading the personal comments people have left. I would like to see more.
Hi Danielle,
Thank you so much for the sweet note – I really appreciate it! Sending lots of love and health your way =) If you want to read more, please follow me on Instagram or Facebook since I post on that more often. And you can also subscribe to recieve updates on any new blog posts that come out. Thanks so much for your support!
-Sara-
Sarah, so spot on! Bravo 👏🏼
I’ve been married for 31 years and my husband still to this day ” doesn’t get it” , still explaining! So frustrating! Thank you for reinforcing that we are not alone and it’s not all in our heads!
Thank you so much for the kind words Margaret ❤️
I’m so sorry to hear that – I know it’s a constant struggle to make others around you understand but you’re not alone in this. You’re more than welcome to message me if need be =)
Sending lots of love and courage your way!!!
Wow. This is so well-written and helpful! I have a close friend with end stage renal disease, and he is truly a soldier. REALLY, really nice and stand-up guy. We’ve had our ups and downs with learning each other’s rhythms, but God is really helping us to find a good place of consistency, balance, and fulfillment for each of us. Something I’ve also come across a lot in my own research is the tip for people to remember that the loved ones and caregivers are adapting and learning too. Especially for the direct caregiver. They often end up ‘having’ to neglect their own health and take a lot of punches mentally, emotionally, physically, and spiritually, in effort to sufficiently care for the chronic sufferer. Even though I’m not his caregiver, my friendship with him has not been an easy journey. But I can say that by God’s grace I’m open to becoming even more informed, enlightened, and ultimately more empathic to those suffering with chronic illness. 🙂 God bless you Sara for this website and please keep it up! It’s needed!
Hi Brenda,
Thank you so much for the sweet comment =) Reading comments like yours truly makes my day and it’s a great reminder on days when I question if my efforts are even helping anyone out there! Also, amazing advice from your research on chronic illness! I’d love to share it with my followers, if that’s okay with you? & regarding your relationship with your friend, all I can say is that he’s got an amazing friend in you! Someone who’s willing to research, learn, and empathize. No one will ever know how we feel and we don’t expect anyone too either! We just want them to be willing to take that extra step to get to know our lives a little more. Sending you warm wishes!!!
-Sara-
I just want to know that someone, especially my family, knows just how bad my life is all the time. I feel like they forget. Maybe they’re just overwhelmed. But they question me on things that are my usual status quo or they do things that I’ve always been bothered by & I struggle to not say anything to them about it because I think that they just forgot. Like light hurts my eyes really bad & I see quite well in the dark but they just flip on the lights or loud, sharp sounds really hurt my ears but they close the door hard & apologize after each time so why can’t they remember not to do that? I have been in a constant migraine cycle since 11/27/08. My pain has not been below 7 since. No matter what I take. I haven’t been able to find a decent doc this entire time. I’ve explained the constant pain, nausea, sensory overload, fatigue, muscle pain, brain fog & emotional upheaval to them many times & I’ve shown them articles written by other sufferers but it just doesn’t seem to stick. I have other medical problems as well so it just keeps piling up. I just feel like no one really knows how much I suffer constantly and therefore they don’t really know me. I used to do so much, I literally ran circles around them! Now, I spend all of my time in bed. I can’t walk w/out a walker & even then I can only take a few steps due to OA in my knees & right hip & scoliosis. I can’t stand upright. I can only sit upright for about 45 minutes. My left shoulder & arm are almost useless. I have nightmares every time I sleep. I wake up every 2-3 hours in pain. I don’t leave the house or have fun. I don’t go anywhere except medical appointments. I have constipation from my meds as well as IBS with diarrhea that comes with horrible intestinal cramping. PLus, I’m very fat. I’ve even seen docs eyes glass over when I tell them all of this! I just feel very hopeless & helpless most of the time & like it’s too much to ask to be fully known by another human being.
Hi Shannon,
I’m happy to see you felt comfortable enough to share your thoughts with me. I know how frustrating it can be to be surrounded by people who are not in the same boat as you! It can feel like they just don’t get it and that’s exactly it at times! If you find that they apologize to you right after banging the door or turning on the lights, the good news is they DO remember! It just doesn’t seem to click before they do it so maybe you need to start being more vocal! I know it can feel repetitive to have to do that again and again but that’s all we can really do. In terms of finding a doctor, do you mind sharing where you live? Maybe I can help! And please don’t call yourself fat! I get the feeling that you’re putting yourself down (correct me if I’m wrong) and I get it because I do it too! But you know what helps? Having people that are in the same boat as you! So reach out to people on the internet! There are SO MANY people who feel the exact same way and they think they’re alone in it as well! But none of us have to be if we can depend on each other.
Sending you lots of love and strength!!!
-Sara-
I hear you and I see you!! You are very important, your illness and feelings are valid!! I’m not heard or seen my my husband of 32 years and it’s hurtful be dehumanized, devalued and just plain ignored!! Thank god for my son and his girlfriend that is living in our house because they make sure all the above and more is important, that I’m okay, really okay! You are important to me too and I can identify with the things you’re going through. I’m always here for you, we don’t know each other and that’s okay but I will be here for you from this day forward for you! We will fight this together and we will survive this together! Thank you for sharing and in a way letting me know that I’m not alone! M
You are so sweet <3 Thank you so much for your lovely message - it definitely made my day! And it makes me so happy to know you're being taken care of so well by your son and his gf! Here's wishing more people out there have family like that! Sending lots of love your way!