What are some guilt-free ways you all decline plans without mentioning your illness? My condition is currently making work & university unsustainable, thus ppl are used to me having what looks to them like free time. Whether or not I’m terribly suffering from symptoms in that moment, sometimes I’m simply not feeling social/at my best so the assumption tht I’m available can feel overwhelming. There are times I want to decline in an effort to prevent a major flare up I feel could come on, but I find myself either accepting plans out of guilt & regretting it, or declining with mention of my illness & feeling guilty if i dont “appear” ill. Help?
Being chronically ill is a balancing act for sure. Trying to handle work and school on top of a social life is super hard and draining! Give yourself some grace and allow rest without feeling guilty for it (harder said than done, I know, but unlearning the guilt of internalized ableism is an ongoing process).
I recommend looking into the spoon theory, if you haven't already. It says that everyones energy is represented by spoons. All activities including stuff like showering and going to work cost different numbers of spoons. Healthy people have an unlimited amount while mentally and chronically ill people have a limited number meaning they need to be careful how they spend them. Saying no to a social event because it might cause a flare is just budgeting energy, it's you conserving your spoons so you don't go into a deficit. I've found this metaphor is a very easy way to explain things to healthy folks and it doesn't have to focus on one illness in particular, just your general wellbeing.
There is a mental health component to being chronically ill that is often overlooked by healthy people because they might not be aware of it. Also, of course, the invisible illness symptoms like fatigue, etc. Don't push yourself if you don't feel like you can handle it. Tell people that you don't have enough spoons for a social outing. Or, if you're just feeling anti social, be honest! It shouldn't be expected that every moment of your free time where you feel alright needs to be spent with others, you deserve time to yourself that isn't just symptom management and recovery.
If the people in your life can't understand your energy budgeting needs, then it's not your fault. Existing, let alone trying to fit work and school in, is exhausting and you know your body best. If they can't respect your needs - and it is a need - that's their problem.
You can always recommend a lower impact activity bc of your health, too! This lets them know that you still want to socialize but also establishes your need for budgeting energy and managing symptoms. With my friends and family they understand that I need frequent sitting breaks when we go out and will sit and wait with me. Communication is key for sure.
I hope some of this was helpful and that you find a solution you're happy with!
“Unlearning the guilt of internalized ableism is an ongoing process.” Most impactful takeaway for me personally. I appreciate every single word of your entire response. This is gonna help me in so many areas of my life, and already positively readjusted my perspective. THANK YOU🥲🥲🙏
Glad I could help!! I hope things continue to improve for you and know that we're all here going through it together 😁
Honestly I just tell people that I have plans or am busy already. You have plans and are busy taking care of yourself. 💕they don’t need to know any specifics if you don’t want to share. People have private things going on and don’t need to share all aspects with those around them. I always say something like “I wish I could that sounds like a lot of fun but unfortunately I’m busy that day. Maybe we can plan another time!” If they ask for a date then I always tell them I have to check my calendar at home but we can text about it later or something like that. Always pushing the topic away until you are able to deal with it
Yess, thank you ❤️
All my close peers/teachers/coworkers know that I'm very antisocial and reserved, so I typically tell them my social battery is just low at the moment and I need a break. They're usually very understanding. For people you're less close with, simply saying 'something important has come up' or that you already have plans may work best!
Thank you ❤️
“Hey I don’t think I’ll be able to hang out “insert day or time” I have a lot going on and I think it would be best if we could reschedule for a time when we both can enjoy being out” maybe throw in something like “please let me know another day that could work for u” or a “I’ll definitely be in touch soon to make plans”
I absolutely love what Lunarr said, they put it wonderfully! I was going to try and stress the bit of unlearning the guilt of it all if no one had, half the time I can't get back to people online because I don't have the energy or masking ability in me to have a normal conversation & it's been rough dealing with it, I've even lost a couple friends. But not forcing myself to do things that have a shit impact on my and my health has made me feel a lot better & now I have more energy for those who stuck around & actually care :)
I 100% agree. I think I have to work on all-around acceptance. To fully embrace that I have a condition tht often appears “invisible” & it requires a different lifestyle than the “norm”, and then accepting everyone can’t be along for that ride- it’s not only okay, but encouraged in a sense! Thank you for your comment ❤️
Hopefully, eventually, you'll have 1 or 2 real friends, who won't have expectations of you, always being able to give your energy to keep the ball rolling. There may be someone who can just come and watch a movie with you and ask for nothing, but for you to be you, when you have energy & when you don't. It's ok to just b a human being ,not a human doing. No one who isn't chronically fatigued can really understand what NO energy feels like. Even my therapist will tell me I just gotta force myself to get out & go places where other people are doing what I am interested in. He doesn't seem to get that to take a shower is a big deal, let alone do my hair, put on make-up, dress nicely then have to drive there. Showers alone are hard for me and I don't think I'm the only one who finds that a daunting task. Grocery Shopping can b overwhelming. It is easier to do things that I really like, but still tough sometimes. That's how I realized that I wasn't just lazy. I don't do 99% of things that I would find enjoyable. I used to beat myself up for not cleaning & grocery shopping. When I saw that I couldn't find the will to do something fun, I knew that my fatigue was not laziness. It took a long time to accept this. I am completely isolated now, except for playing pickleball 3 nights a week. I don't have the energy or know how to make new friends. Sorry, this is about you but I wanted you to know, how another fatigued person, understands. I hope that you can relate and be good to yourself. You know your limits and don't need to add any more stress, as that is energy zapping. I believe that you will find a couple of friends who can just enjoy being in your company without you having to do anything but be present. Having someone sit with you and watch a movie, keeps you from being alone, all of the time. Isolation becomes a way of life and it can be lonely. I hope that there are one or 2 ppl with whom you can be totally honest with and ask them to be with you, as you are. Of all of the s**t that chronic illness brings, I find fatigue to be the hardest. We want to get out & be with other ppl but we're just too tired. It makes for a small world, but you deserve the best quality of life, that your illness allows you💟
Oh no, please don’t ever apologize for your Midas touch; sharing your personal experience with me has been complete gold!
“It’s ok to be a human being and not a human doing.” I was not taught this in my household, society isn’t set up to enforce this, and I surely never gave myself permission to embrace this concept- which is exactly why this idea you’ve introduced has resonated so deeply with me. I relate to each aspect of your personal experience, down to the narrative of gathering evidence to prove to myself I’m not lazy or crazy. It’s shocking to go through such a transformation that makes you unrecognizable to yourself- hard for yourself and even doctors to understand. Can be alienating..and sometimes tough, but we are tougher 💪. As time progresses, so will we :) Tremendous thank you for everything ❤️ I feel better already.
Unless ur not comfortable bringing it up having an illness should be reason enough. If u can't mention it just say ur not feeling good
So true ❤️ Thank you for taking time to reassure me.
no is a complete sentence ❤️
I think the best thing I ever read was no it's a complete answer. You don't owe anybody more than that.
🎯🎯 needed this
Wow I asked for help and I received exactly that! You guys really showed out. Big thanks 💓💓💓💓💓
One of the best ways for me is to not provide a lot of detail. A lot of times we feel the need to overexplain ourselves to “validate” saying no. Sometimes just a quick “sorry I can’t make it!” Is enough
Yes!! Attempts to validate saying no has been the story of my life; that chapter is coming to a close😭. My new homework is to practice saying sorry can’t make it on the front end, as opposed to accepting, overbooking, then on the backend feeling unreliable/guilty tht I’m “letting down” a whole cluster of ppl at once 😂😂😂 Madness! Self-imposed madness at that haha. Sometimes it’s not even as serious to the folks I felt I was “letting “down”, definitely putting too much pressure on myself. To live is to learn😭❤️ Thanks so much for your comment.
yes great for you!! You’re making progress already and it will change your life. Good luck and keep it up 👍
I feel you! It has filtered many so called friends out of my life, which I guess is a blessing. People who don’t understand and make you feel guilty are incapable of getting it, and I have learned that you can’t talk someone into empathy. Guilt and shame do not help you get better. Focus on the people who support you and validate your experience. The other people don’t deserve details or explanations. I just tell people I am ill. It’s hard to have a debilitating illness that is impossible to prove. My father doesn’t even believe me, and he’s a doctor. It’s not fair, so I just avoid those people.
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