Tagged: Chronic pain, fatigue, friends, friendships, Living with SMA
This topic has 11 replies, 6 voices, and was last updated 2 years ago by DeAnn R.
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December 31, 2018 at 7:00 am #16067
Brianna Albers
KeymasterHi everyone! I had friends visiting a few weekends ago, and it was really hard to be around them sometimes, largely because I felt like I had to keep up. I struggle a lot with fatigue and, lately, chronic pain, which has really affected my energy levels. If we’re just hanging out, I can usually hold my own, but it gets difficult when we’re out and about.
My therapist has challenged me to communicate my needs to my friends. She often tells me they wouldn’t hang out with me if they were bothered by what I can’t do, but I still struggle with telling them outright. I wouldn’t necessarily say I’m embarrassed about it—for the most part, I’ve accepted my limits. I think I just feel guilty for holding people back. In a very real way, I’d rather be left behind so I don’t have to feel like people are “settling” by spending time with me.
Have you talked with your friends about what you can do realistically? If so, was it a difficult conversation to have? If not, how have you dealt with not being able to do all the things your friends can? Let us know in the comments below!
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January 1, 2019 at 9:04 pm #16281
Kevin Schaefer
KeymasterI can relate to this in terms of fatigue. There are times when I really prefer not to go out, and would rather just chill with my friends at my house and order take-out. These times are rare, because I enjoy going out. But I have close friends who are understanding when stuff like this happens, and a lot of my friends are more than willing to help me out with my daily needs.
I agree with your therapist in that your friends seem really understanding. If you just keep communicating with them, they’ll understand if you need a break or need to slow down. But I hear you.
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January 4, 2019 at 2:15 pm #16367
Brianna Albers
KeymasterI’ve definitely gotten better at communicating my needs. Some of my friends even go so far as to predict what might or might not work for me – I reconnected with an old friend from college and was pleasantly surprised when she asked what would work best for me in terms of hanging out. It was such a small thing, but it went a long way.
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January 2, 2019 at 6:07 pm #16302
Ryan Berhar
KeymasterThe friends I typically hangout with are extremely close, long-time friends/family members. They even help take care of me, so they have intimate knowledge about my limitations. It’s much different, however, hanging out with newer friends who don’t have that knowledge. I could also see this being problematic with a larger group. In fact, I do go through it with family get togethers. For example, everyone will go hiking or sledding or what not. It’s tough being left out of those activities, and if they do something else to include me, then I feel bad for ruining the fun. That’s why I prefer spending quality time with a close friend or two, rather than some huge get together where I’ll just get left out.
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January 4, 2019 at 2:18 pm #16368
Brianna Albers
KeymasterI also feel bad for ruining the fun! A few years ago, I went to the Renaissance Festival with a few friends and had to bow out (gracelessly) because I just couldn’t handle the terrain. I felt awful and was anxious about it for quite a while, even though I’ve known these friends for years.
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January 2, 2019 at 7:21 pm #16303
DeAnn R
KeymasterI don’t know if I’ve ever actually brought up the topic. Usually if I know it’s something I’ll struggle with I usually just opt out.
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January 4, 2019 at 2:18 pm #16369
Brianna Albers
KeymasterSame here! It’s hard to bring up because it feels like an admission of abnormality on my part.
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January 2, 2019 at 9:56 pm #16304
Halsey Blocher
ParticipantI understand not wanting to hold them back, but I’m sure they aren’t the least bit bothered by your needs. I’m sure it’s much more important to them that you are healthy and comfortable. I’ve never liked having to tell people that I can’t do something with them, but they’ve always been very understanding and accepting.
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January 4, 2019 at 2:19 pm #16370
Brianna Albers
KeymasterThank you for saying this! Sometimes you just need people in the same boat as you to set you straight. I appreciate it 😊
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January 3, 2019 at 10:00 am #16313
Adnan Hafizovic
ParticipantWe have same thoughts about these topic.We usually don’t want to bother our friends,maybe because we always unintentionally think that we are lower human beings.But in fact we must be sincere with all friends,if we can’t lift something,we should not be ashamed to tell them to help us and most of them will help us.
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January 4, 2019 at 2:21 pm #16371
Brianna Albers
KeymasterThat’s a huge part of it for me. Logically, I know that my friends would never look down on me because I’m disabled, but it’s hard to feel and live out that knowledge.
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