It’s so hard for people to understand how you can, seemingly overnight, go from being active and busy to being “anti-social.” Believe me when I say that it’s a very gradual and painful transition, fraught with many difficult adjustments.
It’s a shame that people stop asking us to do things because we’ve had to say no on occasion. We truly would rather say YES to spending time with others, doing things we mutually enjoy. We may have to cancel at the last minute due to a flare-up, increased fatigue or pain, little or no sleep, or brain-fog that drowns our ability to focus. We truly do want to spend time with you.
Social isolation can be both lonely and depressing. It’s difficult to watch your family and friends carry on without you. It’s really difficult to have to say “no” when we want to say “yes.” So even if we say no nine times in a row, please ask the tenth time. We may not be able to stay as long as we’d like or participate in the same way, but we still would love to be asked.
Some things I really enjoy when I’m able: playing miniature golf, going to a good movie, taking a walk along the beach, eating at a great seafood or Indian restaurant, going grocery shopping with my husband, playing a board game. What kinds of things do you like to do when you have the energy?
Last year, I went with my husband to choose a Christmas tree at a local farm. Our first real tree in years. We sat near an amazing fire pit while the gentleman wrapped our tree. It may seem like a simple thing, but it was a precious memory for me. I get very few of those, so I enjoy the moment and just breathe in the wonder, simplicity, and normalcy.
I also enjoy being asked to go for ice cream. My husband and I used to go get some great BBQ and sit in the car by the lake as we ate; I enjoyed those times. I enjoy sharing a good cup of coffee or tea with a friend. I enjoy a good phone conversation as long as it doesn’t last more than an hour or so.
I say all of this so that you will reach out to those who are chronically ill and offer them the simple, but priceless, opportunity to do something special with them. Don’t give up on us.
Please don’t stop asking me.
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.
That’s what hurts the most.even if more then likely I do cancel ,it hurts to just not get invited anymore anywhere.i can’t stray far from my bed or bathroom. But at least it’s
my choice when I have to cancel
Clerinda, I hear your pain and I feel the same way. I’m very sorry, but I’m here for you
This article was written for me. I get immensely depressed over this very thing and have simply lost friends over it. I just say they werent truly friends after all. Where is compassion
Sarah, it’s so hard isn’t it? We need to take the initiative sometimes, and when we’re feeling well, call someone and invite them to do something. Explain that you’re not sure how long you can do it, but that you chose them to spend this time with.
I have terrible trouble accepting that the old me is gone now. I hate not being able to walk anywhere or go horse riding. Painting and decorating and even folding laundry, all too painful to manage now and it makes me feel useless. ????
Terri, I truly do understand. I’m no longer able to sit for long periods of time or take long car trips. Is there some kind of adaptation you can make to a saddle so you can continue to ride? Just know that you are not alone, ok?
And they do “stop asking”. One of my closest friends – A NURSE – stopped asking. The yearly Christmas shopping trip to Canton, TX that I no longer could physically handle was still happening, but I was/am no longer asked to participate. This “friend” even had the never to park her vehicle at my house to catch a ride for the trip… all while I was inside the house with no clue they were even gone. My poor husband didn’t want to deny her the opportunity when she asked him about the parking, and he also didn’t want to tell me because he knew I wasn’t able to withstand the weekend of constant walking. I stayed bitter and angry for the longest time, but I’ve come to realize that it’s her loss and not mine. A true friend would never “stop asking”…
Thank you for writing the column and making those with FM feel somewhat normal!
Wishing you blessings!
Jillybean, I’m so sorry about your friends. Sometimes people aren’t sure how to “be” around us anymore. It just makes it harder for us. You may want to have a conversation with her and let her know you still want to be asked to things, even if it means renting a wheelchair so you can still participate in the fun. Blessings to you my warrior friend ????