Tribes
“Surround yourself with people who add value to your life. Who challenge you to be greater than you were yesterday. Who sprinkle magic into your existence, just like you do to theirs. Life isn’t meant to be done alone. Find your tribe, and journey freely and loyally together.” Alex Elle
“When you find people who not only tolerate your quirks but celebrate them with glad cries of ‘Me, too!’ be sure to cherish them. Because those weirdos are your tribe.” Sweatpants & Coffee
The chronic illness journey is a hard one! I don’t want to be Debbie Downer or anything, but that is just the plain truth. It is a massive challenge to live with pain, fatigue, brain fog, chemical sensitives and other unpredictable and debilitating symptoms. Between the practical issues (“don’t hug me when you are wearing perfume”) and the unexplainable ones (“you are my best friend and I just totally blanked on your name”), it can often feel like us FM/ME/CFS folk don’t make the crème de la crème of BFFs! It seems like healthy people travel through life on one road - the superfast, high speed, multi lane mega highway - while us ill folk are relegated to some country gravel back lane full of divots and debris, where we are lucky if we don’t completely bottom out in the valleys. Literally the road less traveled! It is easy to feel left out, way behind and covered in dust when those turbocharged vehicles race by on the interstate. I totally get it. But no matter which direction we are heading, how slow the pace, or which rutted dirt path we are using to get there, nothing eases the way of suffering like companionship and finding your very own tribe of allies to crawl along with.
Urban Dictionary defines “tribe” as “Close friends, group of people who are loyal to you, care for you like family.” I love this more modern take on what it means to be in intimate relationship with others. Historically, a tribe was more about a common ancestor or a shared religious affiliation with a structured leadership and various divisions. That is not what we are talking about here. In our vernacular, this is all about belonging, shared values, a genuine affection for one another and a strong desire and commitment to cheer each other on.
Going it on your own can seem like a good idea sometimes. So many people in our illustrious community have been treated unfairly, hurt by the words and misunderstandings of others who are supposed to have been better. I have been there. It can feel safer to just shut down and say that we don’t need anyone else and we will manage just fine on our own thank you very much! But, I would argue that living with a chronic health condition is an almost impossible road to transverse alone. There are WAY too many pitfalls! Depression and anxiety have left some pretty deep potholes on the chronic illness roadway and they can be hard to avoid. What starts as a hard day can lead to an intense crash and pretty soon life can feel quite hopeless. Practically speaking, there are times that we all need a hand, someone who can relate to the suffering without judgement or trying to fix it.
Everyone’s tribe might look entirely different. Some people prefer a small group while others like a large collection of folk. There may be people who have similar chronic health issues but there may also be family members, old friends and people living on your street. It could be that a few are pals from internet support groups, one is your cousin, and two are your best buddies from childhood. This is not an either/or proposition but more of a both/and kind of thing.
I have a fairly substantial tribe now, but it wasn’t always that way. It took some time to find my home base and learn to feel safe with others after illness set in. In the beginning, I had a few little bitty trust issues with others, especially female peers, as I had a lot of negative experiences growing up and in young adulthood. Then, when I became ill, I lost close relationships with a number of friends and family who just could not understand how being sick had changed my life. They wanted me to be the same person that I was beforehand, which was obviously just not an option. For a long while I had to really pull back on caring for others and use all the energy I had to care for myself and some people just could not come to terms with that. If you have experienced the same kind of thing (or are right now), I am sorry that is happening to you. It sucks!
It was really hard to let go of some relationships, but I also began to realize how many of those situations were about me caring for others, listening, counselling, advising, and supporting without getting much in return. I was the kind of person who rarely put myself first and was also known for being empathetic, open, and available, so my life was full of people who needed support. I wanted to be the kind of friend others could turn to, and I was that, but it got to the point where so much energy was flowing out to others, while very little was coming back in to help me. I mention this because I have seen the same pattern in A LOT of friends from various chronic illness groups and it seems like a good chunk of us have that in common. We love to give and care but we do not make sure that there is a balance of goodness coming back at us.
Looking back, I wasn’t always the greatest tribal relation myself. I struggled with deep insecurity which often left me feeling jealous and frustrated with peers, especially those who had the life I was longing for… healthy, working, managing motherhood smoothly etc. etc. I think that because I had not accepted my own health limitations, it made it harder for others to embrace my journey as well. I was often trying to pass as normal, pretend all was OK, a “fake it till you make it” sort of mentality. I made excuses for why I didn’t accept invitations to do things (in reality I was just too exhausted and overwhelmed but I did not want to say so) which I think gave the impression I wasn’t interested, or was maybe a bit conceited or self absorbed. Ironically, I was TOTALLY self centered, but not in the way it might have looked like. I was just trying SO hard to convince everyone I was normal that I consumed my own thoughts a great deal of the time! And since everyone in my life desperately wanted me to be the way I was before, there was no one to challenge my behaviour or encourage me to be more honest about my situation. I have a family who’s motto is “there is no problem too big we can’t deny it if we put our minds to it!” I felt like I had to follow the group norms. Did it work? It absolutely did not! But I am sure you already knew the answer to that one.
Over time, I became more and more ill and less and less able to keep up the false pretenses. It was actually quite a relief when I decided it was time to be more up front about what I was going through. There were challenges and relationship losses and of course there was some suffering for everyone involved, but as I was working on myself, I was becoming stronger in my own idea of what I deserved and developing boundaries in what I was willing to give.
Nowadays, I generally stay away from situations with a ton of unnecessary drama, negative energy and demands and rather opt for relationships where there is openness, sharing, authenticity and support. That might look different in each friendship and of course there is room for ebb and flow as our lives change. We all get messy from time to time! My tribe now is filled with people who get it. It was built slowly and over many years with various ebbs and flows (of course) as things are always changing!
If you are reflecting on your own tribe right now and feeling like there are a few empty seats at the fire, then I encourage you to make an effort to build relationships that are affirming to you and reflect your value. There are many ways to get started but the key thing for me was determining to be more honest about my health situation and then see who responded most favourably. A few options that worked for me were reconnecting with an old high school friend, joining an in person chronic illness support group, and connecting with a friend of a friend who was taking the same online course as I was. I won’t deny that it was intimidating at times to ask a group member if they wanted to meet for coffee outside of the larger forum, or approach a casual acquaintance about spending more time together. If you struggle at all with fear of rejection or insecurity around relationships (no judgment here… I have been one of those types myself) it isn’t always easy to step out of your comfort zone. But I will say that overall it has been worth the risk to take a leap of faith and see where it could lead.
Picture yourself strolling across the finish line in a walkathon, or standing in the centre of a ceremony honouring your gifts and talents. Who would you wish to be there? How would they be encouraging you? What does it feel like in your body to experience the joy of others directed at you? There is something magical about using our imaginations to train our bodies on how to be open and willing to have new adventures. As we put that out, as energy into the environment, amazing things can happen.
I am so very thankful to have a tribe of people who love me as I am and who pull out their pom poms when I am in need of a cheer squad. I value each and every person who is willing to put up with my silly nature and (very) bad jokes. Believe me, that alone proves they are good friends! I hope that as you seek out your own tribe, you will find those souls who understand you, support you and reflect your value. You 100% deserve it. I have my go-go boots and mini skirt on, my hair in a ponytail and I am ready to chant for both of us. Give me a “T”, “R”, “I”, “B”, “E”. What does it spell? An awesome, amazing, supportive tribe to huddle with in-between plays and cheer you on to greatness. Goooooooo Team!!!
Tribe definition: Urban Dictionary, Lyric Allanis, March 26, 2004