Help me explain to friends why I often cancel plans

[Tripp]

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.

However, I still am at the whim of pain. It calls the 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.

 

[JamieMarc]

I think that you answered your own question. The way to explain it to them is exactly the way you did. Be frank and honest. Tell it like it is. I am sorry to say that if your friends cannot accept that, what kinds of friends are they? The last thing that you need is more stress in your life which only adds to your illness and pain. This issue and these people are causing you stress, I can tell. Stress is toxic, and by extension those who would intentionally or unthoughtfully impose demands upon you that you have told them would cause you harm are also toxic.

Keep them in your heart, but not in your life. Not if this is what it is like. Life is not really about creating a new you, but more about removing the things from your life that are not really you.

I do not mean to disrespect your friends, but in all honesty, the way you describe it, they are very much disrespecting you.

I am very much upfront about letting my friends know about my condition, my limitations, my best times and worst times of the day, and that I may sometimes need to back out of plans or just say no to invitations. And to those who would press me, belittle me or disrespect me, I choose not to interact with them.

 

[Auriel]

Got to agree with Jamie-marc on this, I don't think it's your explanation you need to change (I think it might be your friendship circle) you're actually being very respectful and honest as a friend (which are really good traits) an hour drive would be long for anyone? (I don't drive but I'm assuming it would be) let alone someone with fibromyalgia, and it's not a case of you just wanting thing's to be that way, it's due to a very painful + energy draining health condition, if they don't understand then they don't understand?, I've had to step away from friendship's (for various reasons in the past) and it can be as painful as a relationship breakup sometimes, and in the long term and looking back it's been the right thing to do, look after yourself for now (PTSD is a hell of a thing, let alone the additional health issues you've got with it)

 

[sunkacola]

@Tripp , I have to agree with the above.
I suggest that you have a sit-down with your friends, or if it is more comfortable for you write them all an open letter and send it by email, and explain things straight out just as you did in your post here.
Maybe explain to them that this is not something you have chosen, and you would do anything to change it, and you are in fact doing everything you know to do to manage it the best that you can, but it is not under your control. You have a chronic illness/disability/condition/ whatever you want to call it, and it will not go away. People who are able to be flexible with your need to change plans at times, or to meet at your house, or to make other adjustments are very helpful friends to you. People who cannot be flexible only make things worse for you.

I have said to people something like the following: I have a chronic and incurable condition that makes my life challenging. I am not asking you to help me or to do things for me. But I am asking you, as a friend, simply not to make things worse for me. If you can be flexible with my need to change plans at times, knowing that I wouldn't do that if I didn't have to, and that I am disappointed when I have to do that, then you will be a helpful friend to me just by being understanding. If, on the other hand, you are going to give me a hard time about it, you will be making things worse for me. Because my life is already challenging, I cannot afford to have people in my life who make things more difficult.

And then, you find out who your real friends are.
I have cut from my life those who cannot be understanding and supportive of me. It's hard to do. And, I have almost no one left in my life as a result. But I don't regret it because the couple of people that are left are true friends, and I no longer have the intense frustration and hurt feelings I had when the not-true friends gave me a hard time for something that is out of my control and not my fault. You shouldn't ever feel as though you have to justify yourself for this, and if someone makes you feel that way you are most likely better off without them.