When you live with a chronic condition, one that’s with you and affecting you pretty much all the time, it’s likely never far from the forefront of your mind. Whether you’re thinking about how much pain you’re in, fretting over an upcoming doctor appointment or trying to remember if you took your medications, chronic illness can take up a lot of space in our lives – so it’s only natural that, like any other part of our lives, we talk about it with people.
But what happens when we get accused of “complaining” all the time?
This can be one of the most difficult aspects of being sick. If you talk “too much” about your illness and how it affects you, people may think you’re being “negative” or “letting your illness define you.” If you never talk about your illness, people won’t understand what you’re going through and won’t be aware of your condition. Oftentimes it can feel like a double-edged sword.
It’s important to differentiate between talking about your illness and complaining about your situation – because so often any mention of health issues simply gets brushed off as “complaining.” But it’s also important to note that even if the person is complaining, they still deserve compassion, support and a listening ear. I mean, hey – chronic illness is tough! I think we’re allowed to complain every once in a while.
Since those with chronic illness are so often misunderstood, we asked our Mighty community to share something people need to understand if they think think their sick friend “complains” a lot. If you have a loved one with chronic illness, consider the following the next time they open up about their health.
Here’s what our community shared with us:
- “I deal with this 24/7. I don’t get a break. I can’t take a vacation. I don’t get to predict what days will be good or when I will have a flare. I am always in some type of pain. Sometimes it’s worse than others. I have no control over this. I didn’t choose to have a chronic illness. Sometimes I just need a friend who will listen.” – Megan M.
- “I want to tell them if they’re tired of hearing about it, then imagine how tired I am of living it 24 hours a day, 7 days a week.” – Nancy L.
- “I wish they would understand that I’m not being negative… I’m just being realistic and they should appreciate that I trust them enough to tell them what I am *truly* thinking, feeling and experiencing.” – Amy C.
- “I need to vent sometimes, please listen. It’s scary when you’re sick all the time, and can’t do anything. Sometimes all I need is a friend.” – Ruth H.
- “We need to stop referring to people who discuss their experiences with chronic illness and chronic pain as ‘complaining,’ rather than being honest about what their life is really like. Listen and don’t judge, don’t call us negative. You don’t know what this is like.” – Jill F.
- “It is absolutely always on my mind, even subconsciously. No matter how positive anyone is, pain can override that. I also can still be positive and still have negative thoughts about things I can’t control, because my body is out of control.” – Heidi H.
- “I wish they understood that what they may perceive as negativity is just a normal day of my reality. It’s not always me complaining necessarily, but me asking for another perspective. I don’t get to go on vacation from being chronically ill. I don’t get to close the door and leave the house to escape my ‘reality.’ And quite honestly, most of the time my words are more about raising awareness and understanding for people like me. Sadly, the courage and strength my voice once had has been silenced. I’ve learned the people in my world don’t want to be aware of this, they don’t want listen, they don’t want to understand. Why look at something that’s sad when you can walk away and look at something beautiful?” – Jennifer M.
- “How much more there is that I don’t say and nobody sees. And for me to ‘complain’ at all means I’ve already reached breaking point and [am] really struggling to cope.” – Andy H.
- “Explaining and complaining are two different things. Explaining that one of my conditions had gone off during the week and this is how it affected me and why I was unable to do things or get things done this week is not me going ‘oh woe is me, I’m in so much pain, my life is awful.’ Telling people how I’m affected by my conditions and having to say to them ‘no I can’t do that’ to every one of their ‘suggestions’ isn’t me being negative, it’s being realistic about what my limitations are.” – Janelle F.
- “Me complaining about my pain isn’t asking for your opinion or advice.” Ellie R.
- “What I go through isn’t pretty. I can’t paint it up in a pretty way to make it easier to hear. It is also my life. I don’t know how to not talk about what is happening to me. I do complain sometimes, just like anyone else. I also just want someone to understand. Please don’t dismiss me. Please don’t accuse me of complaining every time I speak. Please don’t look at me with disdain. Please just hear me and let me know it is OK to speak.” – Jennifer C.
- “I’m not an attention-seeker. I’m scared and I feel alone and I want your presence and understanding. I walk a long journey filled with anxiety, fear, pain, illness, medical appointments, IVs, and very little is spent being symptom-free. Please understand that my 85 percent is my new 100 percent and I also want someone to celebrate that with me.” – Mikki G.
- “For every time we do complain… there’s a million times that we don’t. We’ve reached a point that we are breaking down in pain or fatigue if you hear a complaint. We’ve hit that wall. So be kind. Don’t judge. Just love.” – Jenny W.S.
- “I usually try not to complain, I am just trying to cope. It gets pretty lonely when you’re in pain 24/7, and don’t have a partner for moral support. Anxiety kicks in and sometimes I just need to talk or vent about it. I’m not looking for pity, just for a bit of a friendly support and [to] not feel so alone in this.” – Lucy R.
- “Keeping it all inside, especially when none of my friends and family understand, is pure hell! I *need* to vent. I *need* to say the words out loud, ‘I’m in a lot of freaking pain and it affects every aspect of my life!’ I need someone to just say they’re going to be there for me and not offer up suggestions for treatments I’ve already tried. I just want someone to tell [me] it’s OK, even if we both know it won’t be.” – Sherrie P.
- “I am not complaining. I am sharing my story so others know what to expect. Where medical handouts do not help is in connection and easing fears with personal experiences. I talk for others, so I can help them, which gives me power over a disease that controls my life, and gives others the ally they desperately need.” – Tamara W.
- “For every time you hear me complain, there are a thousand times when I am silent.” – Nessa R.
- “I wish people would just make room for us at the table, because there is room for everyone and every kind of emotional process. For every person annoyed by my ‘complaining,’ there is at least one other person who hears my experience and finally feels understood – finally, not alone. There is no superiority in silent suffering. There is no virtue in sugarcoating. Some people prefer not to talk about their pain, and that’s perfectly valid. That doesn’t mean that those of us who do are somehow lesser. It doesn’t mean that we assume no one else has pain or illness or problems. It means that we need emotional support, because chronic pain is terribly lonely and isolating, and we seek out that support by talking about it and trying to feel understood. There is room for everyone. Room for the silent sufferers, room for the vocal sufferers, room for those who can’t relate, room for those who have overcome these issues. I wish people would stop trying to fit me into the category they’re comfortable with, which is usually one where I just shut up and suffer in silence.” – Mallory T.
- “For me it’s the opposite, I fear people thinking I’m complaining all the time when I vent about current challenges with fibromyalgia, anxiety and postpartum PTSD… Even when they say they don’t see it as complaining (and I believe them), I feel the need to apologize. It adds to the unhealthy cycle of intrusive thoughts and isolation.” – Melinda S.
- “I would say that if they don’t want to hear what I’m really going through, they shouldn’t bother asking how I am. Also, if they want to ‘catch up’ because we haven’t spoken in a while but don’t want to hear anything about my illness, they need to understand that the conversation is going to be completely one-sided. My fibromyalgia prevents me from doing anything outside of doctor appointments and therapy. That is the extent of my life.” – Jennifer Y.
- “I wish they understood that it is part of me, part of who I am – so of course I talk about it, just like I do about work, relationships, my pets, etc. It is my life, it is so much a part of me that I cannot separate it.” – Christina B.
- “I wish they knew it is a coping mechanism. It’s how I work through the pain and all the other crap I deal with every day. I wish they knew by just listening they can make my day a little easier and a whole lot happier.” – Shelley F.