There can be either an abrupt or gradual change in life with fibro. If you are newly diagnosed, this can be devastating. Often, accepting our limitations is one of the hardest things to contend with. Fibro warriors are SO STRONG. We will push past insane limits of pain, fatigue, and deathbed sensations to act like NORMAL people. In the beginning, we do this often. We hop on this insane roller coaster ride of doing nothing, feeling a bit better, then doing too much until we are forced to crawl in bed and cry. One of the things I had the hardest time with was maintaining friendships. I am not a phone person. I don’t know why, but I do not like to talk on the phone. I also was not one of those social media-type people. I liked to talk to people face to face; seeing my friends on dates like going to lunch, coffee, or an exercise class every so often when I could fit it in filled me up.
The mere idea of friends having to come to me in bed was too hard to swallow. Not to mention when brain fog and pain hit, it’s hard to want to be around anyone. So, I would make plans with the best intentions and then have to cancel. It seemed all I had left after my fiancé and children got their share was a below empty tank. Some relationships I lost. Some refused to give up on me. Both were difficult to handle.
On the one hand, I felt guilty for the people I stood up one too many times canceling at the last minute. And those who kept coming back for more, I desperately wished I could be more reliable. But, what I finally had to realize, was that this wasn’t my fault. I needed to be honest about my limitations but not completely give up my social life.
If you find yourself in this place, it’s normal. We have an invisible illness that is hard to explain. But losing our friendships and suffering alone is not a healthy option. In fact, we need all the love and support we can get. When you have fibromyalgia, your mental health can be challenged just as much as your physical health. Depression can become a real problem, and many spoonies struggle with it. In addition, fibromyalgia patients are at a higher risk of suicide.1 Relying on your friends that make you feel good about yourself and fill up your tank is a protective action against suicidal thoughts and ideas.2 If you are there, please let a loved one know, let your doctor know, and/or call the suicide hotline to get immediate help. Feeling awful can bring you to very low places; know you aren’t alone, and it’s important to get help asap.
Social connections are EXTREMELY important for us to maintain. But, we have to learn to do it from a new place. First, we need to explain to our friends that we are going to need them to love us as we are. (If they are your true friends, they will) You need to explain that you aren’t flaky, your body is. Here are some ideas for how to have these conversations:
Spoons! Christine Miserando, author of the blog ButYouDontLookSick.com used a bunch of spoons to signify energy and explain how even the littlest of tasks drain from our reserves. Spoons can be substituted with anything you have in multiples on hand. Here is a link to her essay.
GET REAL AND SPEAK FROM THE HEART
If that theory isn’t quite in-depth enough to explain the full extent of living with a chronic illness, describe it in your own words. Sometimes, the best way to explain to someone who knows us well is to talk about everything that has changed. Talk about your struggles how it feels to have your life run by fibro. What it’s like to spend so much time at doctor’s appointments or in bed. How when you get those good days, there is an overwhelming list of things to do and you need to be careful not to use up all of your energy because you start borrowing from tomorrow.
LET THEM LOVE YOU WITHOUT UNDERSTANDING
If neither of those appeal to you, it may be because, like I once decided, unless you’ve had it, you have no idea. It’s like most things in life; unless you’ve walked in someone else’s shoes, it is hard to feel what they feel. But that doesn’t mean your friends can’t love and support you. Perhaps, they aren’t judging you and know when you say you can’t get out of bed and you love and miss them, you mean it. Maybe, they want you to lean on them. If they knew you were hurting yourself to see them, they’d probably not want you These are priceless friends, and I’m sure you have one of these somewhere amongst your friends and family.
So how do we have friendships when we don’t feel up to exercising or sitting through a lunch or coffee date? Well, we spend time doing other things. It may not be what you had in mind.
Take you to a doctor’s appointment. For one, it’s nice not to have to worry about driving. You’d be amazed at how nice it is to chat with friends in the car, and it makes the appointment less stressful/depressing.
Invite them over to help you cook. It’s a lot of fun to make a meal with a friend and then share it. Also, if you start to get fatigued, you can always take a break while your friend keeps going. No pushing through!
If the weather’s nice, go lay out on a blanket at the park. Bring whatever will make you comfy. You call also bring a picnic basket if you want. Being outdoors is grounding and helps us connect. It can get us out of our pain.
Watch a movie at your house. Pull out Bad Moms, or whatever movie you’ve seen a million times so you don’t have to think and laugh it up. Don’t worry about the laundry mountain in the corner, or the toys all over. You need to get real about what is important here.
What if you don’t have any friends? What if there isn’t someone you feel close enough to for any of this? Well then, lucky for you, there are 10 million and counting of us in the US and even more worldwide who are more than happy to be there for one another. A great place to connect with other Spoonies is MyFibroTeam.com. A social network just for people with fibromyalgia, you will find information, motivation, and a space to connect with others. Similar to Facebook, you can update others or reach out for support when you are feeling low. This was one place that I always went to went I felt completely alone and I always found someone or something to give me hope. To make me feel not so isolated in my suffering. I’ll admit for a non-social media using gal, it was not easy to think about joining a platform, but, I was SO glad I did. Even if you have friends, it’s still a great place to get support from others who get it. There are also several Facebook groups out there. One of my favorites was just for fibromyalgia jokes.
If you haven’t gotten the drift by now, friends need to be there to make you laugh because it helps your muscles relax. It helps our nervous systems release. Notice what comes up when you think about your friendships. Are you lonely? Do you need to spend time with people but you are finding it hard? Do you need to have a conversation and get real about what your life is like with those you love? Do you need to change the way you spend time with friends?
Comment below with any other Spoonie Safe ways to spend time with friends!