How do you respond when someone unfamiliar with AxSpa questions your change of plans?
Sometimes we might respond calmly; other times may be more defensive. Do you have a go-to response? Do you use it as a time to educate? Let's vent!
My husband and I, after my diagnosis with (first) MS, decided to accept many invitations to go to events, but we let them know that we didn't know if we would be able to attend depending on symptoms. The other thing we did was to have people over in very small groups at different times and also let them know about the symptoms.
The other thing we do now is to facetime or zoom with friends, which lessens isolationYes, Rebecca, and, depending on who it was and how I felt that day, my husband or I would let tham know. I would let them know about the MS Sociaty website. Then say that I wasn't going to be able to carry it off that day. Now days, I would refer them to the AS website and tell them that I want to reschedule but will have to call them back. I couldn't pull it off because of pain. If they are someone you feel comfortable with, I would recommend Zoom or facetime or some other video software. It lessens isolation and you still get to talk.
I may mention that I feel bad, or sad, but no deeper emotions becausethat could be a well I wouldn't want to go down. And if they do their homework, they will have a better understanding.
Please take care of yourself! Lisa
- so glad you expanded on your experience for me. It's tough telling people you need to cancel, but self-care is necessary, especially for those with chronic illness/es. Zoom calls are great to have when you find getting out and about more than you can handle at the moment. Wishing you well. Rebecca (team member)
I quit explaining why I can’t make a dinner or parties. I just send a message saying I’m not going to make it. I don’t think people who don’t have AS understand what happens when I’m down. It’s disappointing that people don’t understand. I used to get depressed and worried about my friends and family not understanding. Now I concentrate on myself and self care and I make it when I can to friends and family events. Chin up and move forward is all you can do everyday.
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I love your perspective!
AxSpa can be so unpredictable, we can't worry about what others may think but focus on oneself and keep moving forward.
Thanks so much for chiming in.
Be well, Doreen (Team Member)
This is a fantastic topic. Especially now that Spring 2024 has sprung and we plan to get out and about while the weather is agreeable. When I need to change or cancel plans, I try my best to respond with patience, understanding, and openness. Understandably, those unfamiliar with AS may not fully grasp the challenges and unpredictability of the condition. I would explain that AS is a chronic inflammatory arthritis that can affect various aspects of my life, including mobility, energy levels, and overall well-being. I might share some basic information about AS to help them understand why flexibility in plans is sometimes necessary. Here is an article that may help others who struggle to describe this chronic illness - https://axialspondyloarthritis.net/living/explaining-friends Another link to an article that can help start the conversation because, Yes it can be difficult - https://asif.info/wp-content/uploads/2022/02/Discussion-guide_Print.pdf Wishing all a low pain month ahead. Thoughtfully, Rebecca (team member)
I try to tell them why I have to cancel. But it's gotten to the point my friends have stopped asking or calling to invite me to events. This is very sad and hard for me to understand since we were all so close. But I guess some people just don't want to bother to understand. I will get through this working on it.
I am reading this and I can understand what you are going through and feeling. I think many of us on here can relate to having many around us not understanding how we don't always know how we will feel. This is disease can be unpredictable and different for everyone.
Have you tried showing your friends maybe more what the Axspa is all about? Or maybe some articles? Sometimes it takes time for others to understand and see what it's all about.
Sending you warm hugs,
Nicky (Team Member)Have you tried hosting at your house? If they are good friends they won’t care if it is a mess. They come to see you. I used to cancel more and now I don’t as much because I am finding that a lot of times I am going to hurt no matter what so I might as well go be around people. I get it though.
