Living with Ankylosing Spondylitis (AS) can be hard and exhausting. But you know what the most soul-crushing part often is? How lonely it feels.
You’re sick of feeling different from your loved ones. You don’t want to be a burden. You’re grieving the loss of your former, seemingly stronger self. You’re not sure you can handle one more conversation where someone asks: “How are you feeling? Are things better?”
You secretly think you might strangle the next person who helpfully recommends another diet, essential oil, or book to fix the pain you are in.
Here is what I know: The burden of AS is high but you were never meant to carry it alone.
The good-but-challenging news is that you don’t have to feel quite as alone as you currently do. You can develop deep, meaningful, and supportive relationships while living with AS, and you don’t have to be an extrovert to do it.
1. Take time to determine who you can trust and who you can’t
Many of us struggle to develop and maintain relationships while suffering because we try to share our pain with people who do not have the capacity to hold space for it. We take the risk of telling someone how bad things are, and then we feel slighted when they don’t listen well, they minimize what we’re going through, or get super awkward. Some people just need time to learn how to respond better, but others are simply not the right people to invite to see our struggles. If you are going to develop and maintain relationships of depth while suffering, you have to identify people who are safe enough to show your pain. Safe people listen when you share. They are willing to hear and respond to feedback to better support you.
2. Tell them what it’s like to be you
When you’ve found people you can trust, share with them the ways AS impacts you and the adjustments you might need in your relationships. Your friends and family are not mind readers! Educate preemptively about flares, medication side effects, and the way AS can discourage you. Be willing to speak your pain and needs out loud during flares to help your support system know how to support you. Describing the challenges you face deflates the power they have to make you feel frustrated and alienated.
3. Talk about the uncomfortable stuff
Acknowledge the mutual discomfort of encountering pain that cannot be fixed. It is uncomfortable for both you and your friends and family to witness the impact of AS on your life. Be willing to broach how hard it can be to see your pain or discouragement and not be able to alleviate it. When we acknowledge the discomfort, the discomfort loses its authority to distance us from one another.
4. Remember no one else can know exactly how you feel
Release the expectation that your friends and family will be able to fully understand your experience of having AS. Only you live in your body. When you feel misunderstood, offer yourself friendship by acknowledging your emotions instead of dismissing them. Practicing mindfulness can be a powerful way to acknowledge your experience and gain calm and gratitude in it.When we keep releasing the expectation of being as understood as we wish we could be, we gain space to encounter relationships as they are.
5. Don’t give up — forming bonds takes time
In my work as a therapist and a writer, I talk every single day with people who are living with various forms of long-term suffering, including AS. Most want deeper friendships. But most have felt hurt in relationships where their suffering was not received well. Suffering is demoralizing and disintegrative, quite seriously impacting every part of our human existence, down to the capacity our brains have to form and engage in relationships, coping, and meaning-making. If you are giving up too quickly on relationships and friendships in suffering, you have good reasons. But your life has such immense value that you deserve to be seen, known, and supported no matter how exhausted, defeated, or disappointed AS and others have made you feel.
The biggest thing I see stopping people who are suffering from having meaningful relationships is this: Most people give up too quickly.
The work of developing meaningful relationships while suffering is worth the reward, even in the agonizing moments in the middle when you are not seeing results. Give the work of developing meaningful, satisfying relationships time. When we are willing to show our pain to our friends, it gives them permission to be honest about their hidden pain, too.