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.

 

[Altered life]

Over the past year I have lost a major amount of mobility & strength due to excruciating pain. I couldn’t cope anymore but there’s no physical reason for pain on tests. The doctor told my family/friends that my pain is psychological. Since then if I mention I’m in pain they tell me that I should go for a workout ( I was very athletic). Although I keep telling them I can barely manage a flight of 10 stairs. Or I should get psycho-therapy as the pain from past trauma may be stuck in my muscles etc. Or I might consider electric shock therapy. They believe that if they acknowledge my pain they will be enabling my delusions of pain. I understand there is no answer and bite my tongue. I told them I have been looking at going to Switzerland for assisted dying through Exit International. They refuse to discuss it. Thank goodness for this site. Seems we all have a credibility problem.

 

[BlueBells]

Hi @Tripp

I see you just made the one visit.

Do come back and see the advice people have offered. I'm sure it will make you feel understood at least, but give you some other options to consider.

 

[Anabrock]

Over the past year I have lost a major amount of mobility & strength due to excruciating pain. I couldn’t cope anymore but there’s no physical reason for pain on tests. The doctor told my family/friends that my pain is psychological. Since then if I mention I’m in pain they tell me that I should go for a workout ( I was very athletic). Although I keep telling them I can barely manage a flight of 10 stairs. Or I should get psycho-therapy as the pain from past trauma may be stuck in my muscles etc. Or I might consider electric shock therapy. They believe that if they acknowledge my pain they will be enabling my delusions of pain. I understand there is no answer and bite my tongue. I told them I have been looking at going to Switzerland for assisted dying through Exit International. They refuse to discuss it. Thank goodness for this site. Seems we all have a credibility problem.

A pioneering nurse and professor Nancy Roper famously said "A patient's pain is what they say it is". Your doctor should probably go back to school!

There is a neurological condition called Functional Neurological Disorder which can cause pain, seizures, paralysis, even blindness and deafness. It is caused by psychological trauma so doctor's used to dismiss it as 'just psychological', but their attempts at psychotherapy and counselling did little. In fact it is a neurological ie in the brain function, condition which is initially triggered by severe psychological trauma. It requires specialist therapy and medication which can really help, although a complete cure is unlikely. I have two friends with FND who've done well with treatment but they're still unwell.

Now I don't know if what you are describing is FND - it sounds like it could be. If so, you need way better doctors who can explain it properly to you and give you a proper treatment plan. The people that treat it are usually neuro-psychiatrists - the sort of doctors who treat Tourettes, psychological effects of epilepsy, traumatic brain injury etc. The interface between neurology and psychiatry, which is where FND sits.

Now as you're posting this on a fibro forum, I'm wondering if you're actually diagnosed with fibro, or strongly suspect fibro. But you might find it useful to talk to your doctor about FND and if he confirms that that is what he's talking about you can research that and find specialists who might be able to help you. Save your money for Switzerland until you've tried the therapies that do work.

I'll just add I'm a therapist, but not a medical person in any way shape or form. I've done some training on FND to help clients, but I'm just an additional support to these patients who have already gone through treatment. I talk about it on this site as knowledge of FND is not common and I suspect there are many people who could benefit from learning about it.

 

[LouBug17]

Hello everyone. I was dx in 2004 with Fibromyalgia from my Rhuematolgist, and Chronic Fatigue from My Primary Dr.
It's been a long journey for me
Making my depression worse in last few months. It's hard for friends & family to understand any of this. I'm tired of trying to explain about these dx's & them believe it ! I've been needing to talk to others & found this forum. I'm going to call all of you *My Peeps*.....So, now I know there are others like me, & I need to have someone to understand !! Fibromyalgia needs to put Out there !! WE need to be listened to. I'll be waiting to hear from My Peeps ! New Member Here !!
LouBug17

 

[BlueBells]

Hello @LouBug17

Welcome to the forums, great to see you.

I can see you've been a member for a while, but first post, is that correct? Guess pretty much you have already wandered around the site, so I won't suggest that then , but do check out the Media if not done so yet, some great stuff in there.

Feel free to join chats anywhere, never know what might ring a bell with you

Sharing some of these posts, and especially Media, that might help your friends and family understand a little, but it's hard enough for us to make sense of it in the first place

Take care, hugs

 

[SBee]

Hi @LouBug17 hello and welcome from me too. We are happy to be some of your Peeps

I dont always try to explain to some people anymore, it just gets too frustrating. If people do ask about my health I tend to just say chronic health conditions. I just can't be dealing with the blank looks or even worse those that think fibromyalgia \ME are almost 'made up' conditions. They wouldn't think that if they had to live with them...
Here,as you know,no explanations are required. You can say as much or as little as you want with no judgement. Nice to have you here!

 

[sunkacola]

Hi @LouBug17 from another one of your new Peeps!

We are all here to help each other, and we are glad you found us. You are not alone, even though we are not there in person.

I have found that trying to actually get other people to understand what fibromyalgia is like is pretty impossible. It's like trying to understand what it is like to be deaf, or to lose a leg or something if you have not experienced it yourself. They can't really understand, but they can be supportive.

What I say to people is that I have this condition, and I only elaborate on exactly the symptoms and so on IF they ask and are truly interested. Most people don't really have the interest to learn all about it, and they don't need to. What I tend to say is that I will sometimes have to change plans or cancel because I am unable to do something when the time comes. I assure them that I will never cancel for frivolous reasons, that I want to hang out with them, and that if I say I really cannot that is 100% the truth. I tell them I am not going to be asking them to do anything for me, and that they won't need to hear me complaining about things (that can burden people really quickly), and that they don't need to think they have to do something to help me or make it better. The only thing I ask for is that they believe what I say as being the truth, and that they don't make things harder for me.

If a person just believes me if I have to tell them I have to reschedule and then simply agrees to reschedule, then they are doing all I can ask. Anyone who gives me any kind of hard time for changing plans, or who says things like, "are you sure??" or in any way indicates they don't believe me is making things worse. I can't have people in my life who make things worse, so I have removed from my life everyone who gives me a hard time. I recommend this, although it can be painful. And some people will stop asking you to do things with them if you change plans a lot.....that is something we have to accept. It is better than having them get angry, try to argue with you, or otherwise make you feel bad.

What I have found is that my TRUE friends, the ones who really care about me and are loyal, don't desert me, and never give me a hard time. That turns out to be a small number. But I would rather have a small number of genuine friends than a large number of pseudo-friends.
Wishing you all the best.

 

[Altered life]

Welcome to the Forum. I find it very helpful. Our pain symptoms end up isolating us. It’s good to have a non-judgmental group of experiencers to talk to