Help me explain to friends why i often have to cancel plans
I have chronic pain related to a genetic condition (I'm predisposed to rupture discs, and currently am putting of multi-vertebrae fusions on my C-spine and L-spine), and through PTSD, which can make my pain go completely nutty. After ten years of heavy drinking and 4 years of doctor prescribed opiods, I have a holistic pain management program that allows me moderate pain relief through muscle relaxers, lyrica, medical marijuana, daily stretching and maintenance exercises. I am extraordinarily proud of who I am and where I'm at in life, but it is exhausting to keep up, and the pain still calls shots.
Recently, my friend group, all of whom are 20+ years younger than me told me they're frustrated with me for making plans and cancelling them, asking them to meet at my house, avoiding traveling them to see them, and just in general expecting them to plan around me.
How do I explain to them that plans for me are always day by day and dependent on my pain level? And how do I get across that driving longer than an hour pretty much guarentees I'll be in shitty pain when I arrive, which is further exacerabated because there's never a comfortable place to sit or sleep (in the event I spend the night). I often ask them to come to my house because I know I will have a comfortable place to be, and at the end of the day, even if i am in pain, I'll have my bed.
I've lived with pain for 30 years, and this is the first time it's been managed properly, but it's still not enough to pass as normal, or to be fully present in a reliable way.
I'm very frustrated and sad, and more so because I feel like I have to justify my condition, and it's very reminicent of going to doctor after doctor, asking them to believe me and in my pain.
any advice is much appreciated. Sending my heart to all of you.
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@psychedancer THANK YOU! You have shared my husband's situation precisely. And from your perspective it means so much. He has suffered from chronic pain for at least 20 years and did all the things you described. Still, no one really understood. I want to cry for you, for him, for all who suffer this way but have been silenced. A nurse during one of his many hospitalizations once said said, compassionately, that she felt so bad for him. She said if you break a bone or have a wound people are so understanding and compassionate. But when they can't see your pain, they write it off. So true.
He has been fortunate to have friends who get it and that is a real blessing. They are his age, early 80's now, and either suffer with medical conditions of their own or have others in their life who do. That makes a huge difference.
Hi @jehjeh and others participating in this topic,
Something that I have concluded also, is that I am just as likely to dismiss others' suffering over any number of hidden conditions that aren't necessarily physical or visible: monetary troubles, family problems, business issues, etc. Because confidentiality may keep this kind of pain beyond my knowledge or comprehension, this might also leave them feeling misunderstood or uncared for by me, even if they have tried to communicate the situation they're enduring.
You are so right - it makes a huge difference. Not insurmountable as you relate there are some who "get it", but the difference is huge.
Blessings and peace to you in this new year!
My name is Sherry. I understand pain. I have it 24/7.
If you ever need to talk just ask and I will give you my email so we can talk.