*Disclaimer* Fibromyalgia and other chronic pain conditions are unique to each person’s experience. When in doubt, ask your friend, family member, or loved one who is living with a chronic condition what works best for them.
I found myself the other day being quite frustrated and irritable about life in general. Now, some of that can be written off due to changes in medication (thanks, Cymbalta!) but after feeling it out I realized that I was annoyed with the back and forth of care from loved ones who mean well. It’s a difficult balancing act, being helped when necessary vs feeling like you’re being treated as an infant. And as my condition is invisible and episodic, it’s almost impossible to know when I’m having a good or bad day from the outside looking in. Talking to my family, I realized that I’m saying a lot of ‘don’t do that’ in the moment, but never have I sat down and said, ‘please do this’. So as a handy reference sheet for my loved ones, and possibly some peace of mind for those with friends and family who are chronic pain warriors, below is a (not so) comprehensive list of :
How to be Fibro-Friendly!
Starting with an easy one here. My illness has more ups and downs than a rollercoaster, and sometimes it feels like I’m on one that never stops. Some days I can function almost ‘normally’ and others I need a mobility aid to get around. I never know what’s going to happen next (though at this point it wouldn’t be super surprising if a limb fell off). If I don’t know what’s coming, there’s no possible way for you to know! So, when in doubt, ask. I will never be offended by you asking what my limitations are for that day, hour, or moment.
Friendship alterations not required
One of the worst parts of being chronically ill is feeling like every aspect of my life has changed. Sometimes I miss my old life so much, it’s as if an old friend has died. One of the best ways to help with this is to continue treating me like you did before I got sick. Some people are unsure of what to do, and so they end up walking on eggshells. They’re not sure if I can do the thing, so they don’t invite me to the thing. I understand the thought process behind that, not wanting me to feel obligated to do something that will hurt me later or trying to save me the guilt. But know that even if we have the mutual understanding that I might not be able to participate at the same level as anyone else, I still enjoy the invite because it reminds me that I’m still part of the group. It makes me feel that even though pretty much every other part of my life has changed, all I have to do with my friends is just be me.
It’s the little things
Because life is so unsure, and frankly because I’m on so many different medications with this lovely side-effect, I am anxious pretty much 24/7. Some of that is well-founded anxiety surrounding things like the US government, global politics and economics, the fact that we’re destroying the one and only planet we have and we might not be able to reverse the damage setting an actual expiration date for the human race- wait, where was I going with this? Sometimes my anxieties are smaller but still just as real, like ‘how can I do this project if I use all my energy to cook dinner?’ or ‘I keep cancelling on my friends so now they hate me’. Simple things like a ‘thinking of you’ text are a soothing balm on the fire in my brain. If you have a chronic pain warrior in your life, consider doing things like going to the grocery store with them to carry bags, or offering to cook dinner once a week for movie night, or just hanging out with them even if you aren’t doing anything specific. Those little acts of kindness mean the world.
Take time to yourself
How does taking care of yourself help us, you ask? Another big cause of guilt and anxiety is the feeling that we are a burden on our friends and family. We feel badly for always asking for help and needing extra care, so sometimes we don’t ask, inevitably making everything worse. When you are open with us about how you’re doing, emotionally, spiritually, physically, mentally, then we feel more like we’re part of a give and take relationship. Sometimes we’re going to need more help than you can give, and that’s okay. It’s not your job to be our care-giver, nor should you feel that way. Having a loved one with a chronic illness is stressful on you and can cause you just as much worry and strife as it causes us. Take time to yourself, and practice proactive selfcare. You are a human with needs just like anyone else. Just because you don’t have a chronic illness does not mean that your needs can be ignored or put off. We love you and realize that our condition can be taxing on those we love, so we understand that sometimes you need a break. Just be vocal, and maybe send us a few texts reminding us that it’s not that you hate us, because, you know, anxiety.
Being fibro-friendly is more than just this list, because fibromyalgia is more than just a list of needs. But hopefully this list is a good starting point to everyone with chronic pain warriors in their life.