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When I ask fibro people about their social life, they often respond “What social life?!” A lot of fibro folks arrive at this place eventually through a gradual agony of social miscues, misunderstandings, and feelings being hurt. The blame doesn’t usually lie on any party, but, sadly, those with fibromyalgia often end up letting social connections wither and die rather than continue to repeat these psychologically painful patterns. Why is this unfortunate phenomenon so common? And what can we do about it to minimize the pain for everyone involved? These are the questions we’re going to attempt to answer in this post. Although one’s social life is very broad, for now we’re going to limit the scope of the discussion to the unique problem of being invited out to an event by friends or acquaintances and being unsure of how to navigate the various pitfalls that simple invitation can bring.
What are the unique challenges that those with fibromyalgia face when faced with an invitation to a social event, such as a night out drinking with friends? Almost immediately upon being invited to something, the fibro person’s mind starts to race. Some internal questions they might ask themselves include:
- Will everyone at this event know I have a chronic pain condition? If not, is it worth telling them?
- What are the physical expectations of me at this event?
- Will I be able to keep up with everyone else? (or at least pretend to do so?)
- Will I be holding the whole group back if something takes longer for me than the others?
- Will I be pressured to eat or drink things that I know are bad for me with my condition?
- Will there be private areas such as restrooms available where I can go if I’m having a flare-up?
- How far away from home will this take me? Will I be able to escape if I have an emergency?
Scumbag Brain Surfaces
There’s a lot of mental dissonance when you’re invited to a social event. On the one hand, you feel flattered that someone thought of you and likes you enough in the first place to extend an invitation your way. On the other hand, you’re dreading all of the numerous ways your fibro pain could intervene and make you miserable if you end up going. So it can feel like you’re rolling the dice every time you say yes to an invitation.
Another cause of mental dissonance is that, often, these are things that you really enjoyed and had no problem with before becoming afflicted with fibromyalgia. Humans are social creatures by nature and it’s natural to receive a lot of positive energy by socializing and having fun together. And it’s not that you don’t want to join in, but that you don’t trust your body to cooperate in the moment. It’s incredibly frustrating.
Invisible Illness Front Lines
This aspect can be especially hard if you’ve been part of a friend group for a long time and have a history of, say, going on weekend hikes. Your friends might continue to ask you to join them on such excursions even after you’ve been diagnosed with fibro, forgetting that who you are now is radically different than the person that went hiking every weekend, even though on the outside you appear the same. There’s a reason fibromyalgia is considered one of the most iconic “invisible illnesses”! It’s painful to be reminded of this over and over again.
Something you have to consider is how well those doing the inviting know you. Do they understand that you are in chronic pain and that you might have trouble getting there on time or need to exit early (and if you do, it’s not their fault)? Or are they unaware of your condition and would take offense if you didn’t show up or had to leave early? It’s a lot easier to tentatively say yes to someone of the former group.
It’s a constant struggle whether to be “out” about your fibro to friends and acquaintances. You might decide, for perfectly legitimate reasons, not to let everyone you meet know about your condition. You pretend to be OK and soldier on through daily life without drawing extra attention to yourself. That’s why there’s a popular meme in the fibro community for when people claim we are faking our illness (often in the context of a social gathering), when you know that the truth is you’ve been faking being OK this whole time; only now are these other people getting a glimpse of what your real situation is actually like!
Two Sides of the Coin
Let’s say you bottle up your reservations about going to a social event and just accept and go anyway, hoping that pretending to be OK will be sufficient to get you through. There’s a very real risk that annoyances or pain could build up to a breaking point and you just can’t take it anymore. What do you do then? Snap and make a scene in front of everyone? Withdraw into the shadows and disappear? Confront everyone else with your struggles after having seemed fine before? There are no good answers in that situation.
The alternative is to decline the offer and just stay home while everyone else is out having fun. This can seem like a good way to avoid all these potential problems. But of course this raises the question of what your “excuse” will be. Do you lie and make something up? Do you dance around the real reason you don’t want to attend? Do you flat out tell them you’ll be in too much pain to enjoy it? Again, there is no great way to go about this. And just the fact that the offer was there in the first place can turn a perfectly normal, cozy night in into a disaster ball of shame, regret, and FOMO (fear of missing out). I’ve been there many times, trust me.
So it’s no wonder just the simple act of being invited to something can seem like a lose-lose situation. If you go you risk having a flare-up, and if you stay home you might judge yourself harshly for playing it too safe. If it wasn’t clear already, this is something I still struggle with myself all the time!
Pathways to Improvement
It’s a really tricky situation, but there are a few tips I’ve discovered to help navigate the waters and minimize misunderstandings. Probably the best thing I’ve discovered is that the more information I have before making a decision, the more comfortable I feel saying yes (or no) to an invitation. For example, let’s say an acquaintance invites me to brunch along with some other people. Here are some questions I might ask or things I might research before giving them an answer:
- Where exactly is the venue? (The closer to home it is, the easier it will be to arrive on time and quickly exit if I need to)
- What’s on the menu? (To see if there’s something good for me to eat that won’t cause further pain down the line)
- Can I go there on my own beforehand to scope it out? (To find the location of the restrooms, try out the food to see how my body reacts, etc.)
- What’s the temperature going to be? (If it’s cold, then I’ll know to bring warm clothes)
- How am I getting there and leaving? (If another friend drives me, I might be stuck with them even if I feel like leaving)
- How many people will be attending? (This could go either way depending on your personality; big events provide more anonymity but can be more stressful, while smaller groups can be more relaxed but harder to leave if necessary)
- How long is the outing going to last? (To compare to what I know my limits are)
These are just a few examples, but I could go on and on. The point is that by minimizing the number of unknowns, I can make a rational decision as to whether I think I can handle the event or not. I even find that simply having more information ahead of time calms me down because I know what to expect.
Another thing you can do in addition to information gathering is simply to be honest with the person inviting you about your chronic pain condition and the ways in which it limits you. This gives them a chance to demonstrate empathy and more fully understand your reservations about attending. Plus, if something comes up during the event, they will be much more understanding and accommodating.
Finally, you can flip the script and be more proactive. Instead of always receiving invitations that you feel awkward about, why not propose an activity that you know you’ll be able to manage? Perhaps something close to home in a familiar, comfortable environment. Something fun and low-stress with minimal physical exertion required. By proposing something and inviting others, you demonstrate that you care about them and are willing to take the responsibility to host once in a while. It could make you appear much less cold or flaky for declining or canceling invitations, especially if you have a history of making up excuses for missing their events.
With a little forethought and careful management I’m confident you’ll be able to improve your social life in no time!