There are times, like today, when I can’t make it to my commitments due to unforeseen pain. How do I explain to my friends and loved ones that I really do want to make it to these events or just to see them but pain gets in my way and makes it very hard for me to be reliable? I feel terrible that I sometimes have to cancel events or meetings with people due to pain I didn’t see coming. I feel like I am unreliable and that other people do not truly understand that I really want to go through with my plans with them but I can’t always do that if the pain is bad on the day.
I think we can all relate to needing to cancel plans at the last minute, along with the shame and guilt that keeps us up late at night.
However, we don't have any control over our bodies. Personally, I've been fighting very hard at forgiving myself. The shame only lends to further isolation and loneliness. In a sense, this is my way of taking back control.
Secondly, having a very honest and open dialogue with your loved ones can go a long way. Explain your condition thoroughly, including underlying symptoms. This gives them facts that could dismantle any assumptions or judgment.
Thirdly, also be vulnerable enough to describe how you feel when you have to cancel. E.g., feelings of depression, anxiety, isolation, frustration, helplessness, etc..
Lastly, people want to feel needed. If help is offered, accept it (it took me 10 yrs to learn this important lesson). It opens up the possibility of a reduction of your stress and strengthens your bond with them.
One of my conditions is Fibromyalgia. I found a YouTube video that was created to show to loved ones and essentially relays the aforementioned information, specific to fibromyalgia.
This can be really hard. I'm in my 20's, the time of your life when you are supposed to have energy and be going out, making and enjoying friends, meeting people.
Since almost all my friends are young and healthy they have a very hard time understanding how I am in pain everyday, and how that effects me. It takes a lot of communication.
I cope by being very vocal about my condition, for me it is Atypical Trigeminal Nuralgia, aka severe nerve pain in my face 24/7 for years/forever. All my friends know I have it. I have related it to shingles, migraines, and things that they understand, even a poor comparison can bring more understanding.
Unfortunately you have to be careful how you talk about pain so you don't give the impression of being a "downer" all the time. So except for those moments where I am about to breakdown from the pain I try to stay factual, and as positive as possible about it.
Passive signals of pain are really helpful for me too. I personally paint my face where it hurts with colorful facepaint, and use lidocaine patches, and sometimes I put them on more to make pain visible than to end pain. When people who I have told my story too see the patch or the paint they know it is a bad pain day and they adjust their expectations accordingly.
Sometimes setting up a passive visual signal, maybe a button, or a bracelet, or something is a visual cue for friends and family.
Code words like "low batteries" or low spoons, using the battery and spoon therory's can help too, but you have to set these up with long blunt, heartfelt discussions before hand. Sometimes offering a counter list of low energy activities I could do with them in place of current plans helps too. It shows you do want to see them and lowers the "regection" feelings they have.
With big groups I've just learned not to care what they think, I make sure people who care for me know what is going on, I've even explained my pain from the pulpit in church when asked to introduce myself to a new congregation. That helps me be calm and comfortable around them. But you don't owe anyone an explanation and if they judge you for it that sin is on their head, not yours.
I have only experienced this with my job. If i call out 2 more times before the call outs feom the previous year fall off i will be fired. Luckily my boss is married to a man with purple peripheral neuropathy and I can talk to her and reason with her about the pain which gives me hope that if my boss who barely knows me outside of work can understand, that friends and family should be able to understand if we just explain what's going on.
I agree, just be open and honest as you can with everyone. I know i struggled with beimg honest about how bad my pain was and i would go out anyway and payed for it for the next month or two. I wish youbthe best of luck.