Forming Community

Using my insights on apologies to make new relationships

Last week I said that I view apologizing well as an indicator of a healthy relationship. I focused on the challenges of apologizing because I want to become someone who can apologize well, without falling into shame. This week I’m going to write about forming community and relationships.

On the path (hopefully!) to more friendships and in-person community.

The importance of community

Part of the reason my previous relationship ended is because we didn’t have enough community support when I got sick, and we didn’t know how to ask for support when we were drowning in pain, caretaking, and grief.¹ The expectation we had of ourselves, and that I assume others had for us since we received so little help, is that it was up to us, on our own, to handle our new reality where I was barely functional because of long COVID. This was devastating. We needed so much help. I needed medical help, help to advocate for myself, help to learn how accept my new limitations, help to process the ocean of grief I had for my former life, help to slow down enough to heal rather than push my body to do damaging exercises. I needed help with showering and washing my hair. I needed help finding accommodations. I needed help with the shame I felt for being a burden. I needed help to know I was still a valuable person with a life worth fighting for. My ex needed help with running errands and taking care of our apartment. He needed help with dealing with his grief over losing his former life. He needed help with caring for me so he could have breaks. We needed help with making the air safer for everyone to breathe so that neither of us got sick again which could deteriorate our health even further. We needed help with figuring out how to adjust to our new reality. We needed help with finding hope.

I didn’t have that community a year ago. Maybe our friends and family thought the government would sweep in to take care of us, but I can assure you they did not. I did not qualify for support because we were common law partners and he made too much money, although not enough money to pay for everything we needed. We were very alone.

Since I have moved back in with my parents, and after I started some experimental treatments that raised my baseline enough to allow me to expend the needed energy, I prioritized joining online communities to get some of my needs listed above met. They have been wonderful. They have helped me find joy, purpose, compassion, acceptance, and healing and I value them so much. But they are all online and I crave in person connection too. In the 11 months since I have moved out of Toronto, I have seen one friend in person once. It’s time for me to work on finding community with the people I live near.

I also want to join (or create) a community where we automatically help each other when times are tough. I want to make sure others aren’t abandoned when they get sick. I don’t want anyone to feel they aren’t important because they’ve developed a chronic illness and/or disability. I don’t want caretakers to resent and abandon their loved ones because they have no one to go to for support. I’m still limited by both energy and money in the ways I can be a supportive community member, but there are so many ways I can contribute. I’m certain my friends and online communities would agree.

Life is hard. Connection and positive feedback help make it easier

Even outside if times of crises, community is important. You may be reading this and saying to yourself, “duh, Kate, of course we all want friends! You don’t need to write an essay about it”. But I do, to convince myself. I’ve been hurt so many times that my instinct is to hide and try to become self-reliant, even in the face of so much evidence that I could never become 100% self-reliant. As much as my past trauma and the thought of future conflicts make me want to run away and live alone in the woods, I know I wouldn’t survive that. I need other people, including people who will meet and accommodate my needs – I can’t live life alone. I don’t think anyone can.

We live in very dysregulating times. I don’t think it’s controversial to say the people and institutions in power do not want the rest of us to be empowered. They do not want us to like ourselves. They do not want us to experience respect. We are bombarded with continual marketing messages that tell us there is something wrong with us that costly products and services will fix. We are encouraged to fight amongst ourselves and hate each other rather than join forces and fight against the systems that disempower us. We can simultaneously communicate with dozens to millions of people on social media and receive more negative feedback than we can process.

I have found that receiving compassion, empathy, and acknowledgement of my pain is regulating and it is healing. It reminds me that I have value and deserve respect.  But living and interacting with others can be challenging because we have different needs and priorities. Disagreements are bound to happen, and I no longer want to let this get in the way of supportive relationships.

How autism impacts my friendships

When I didn’t know I was autistic, I found maintaining friendships difficult. At first, I thought my problem was being too shy, so I made an effort to force myself to talk with people. I practiced at job interviews and first dates. I went to networking events. I volunteered. I think I became rather good at building rapport and connections, even though I was still quiet and shy. But these connections rarely lasted.

I wish English had more words for different types of friendships. Because I tend to process words literally, I’ve thought of all people who are my friends as close friends. For example, Facebook has always been stressful for me because those connections are called friends and I know I’m not friends with all of them. Even when I used Facebook regularly, I almost never initiated a friend request with someone I had just met because we weren’t friends yet, and implying we were friends with a friend request felt dishonest and too intimate.

I’ve since realized that many people who I saw as friends saw me as more of an acquaintance. Maybe I was someone they enjoyed chatting with at work but didn’t imagine me as someone they would want to hang out with outside of work. Maybe I was a good school friend to have because I elevated group work and helped them get a good grade, but I wasn’t otherwise someone they considered a friend.

Other times genuine friendships would end after a disagreement that I didn’t know how to resolve. Or I got depressed and/or burnt out and didn’t know how to explain what I was going through and why I was being “a bad friend” when I disappeared. Or I felt so much shame about myself I couldn’t possibly accept that they would want to continue being my friend once they knew the truth about me. Sometimes I did have friendships with people who couldn’t accept the truth about me, especially after I became chronically ill and needed new accommodations to maintain friendships. It’s taken me a lot of time and reflection to view that as a “them problem” and not a “me problem”.

Shortly after my breakup, I had a text and voice note conversation with someone I thought had been a friend, until she stopped trying to connect with me when it became clear I wasn’t getting better. It was a difficult conversation as I tried to broach the hurt I felt from her pulling away from me after I got sick. The conversation was awful. I couldn’t convey what I wanted to convey and I felt blamed for everything. I was absolutely gutted.

One good thing that came from it was a desperate urge to finally tell my two remaining friends that I’m autistic and plea for our friendships to never end because of miscommunications due to different communication styles. I couldn’t bear the thought that they would interpret me asking questions as an interrogation or undermining their knowledge when I only ask questions to better understand. Thankfully, they are wonderful, compassionate women who were happy to know me and accept me as I am. I cherish them deeply, but due to distance we mostly can only connect through texts and phone calls.

Making honest and authentic connections

I’m not sure if this is true for everybody, but my impression of the guidelines for dating, and online dating in particular, is to make yourself as attractive as possible, both physically and in terms of personality. Only after you’ve started dating do you start to show your less attractive qualities. But I think this advice is rooted in shame and I don’t like it. I want to know the authentic person from the beginning, and I want to show my authentic self from the beginning. I don’t want to pretend that bright sunlight doesn’t bother me and then two months later admit that actually, those long day time walks on the beach are very painful for me! This is true for potential romantic connections and true for potential friends too.

So, with all of that in mind, I have a plan to get to know my neighbours.

The Plan

I wrote an introduction letter – see below – that explains both my needs/boundaries and my strengths – what I would like to contribute to the community and how they can lean on me if they find themselves in need. So far, I’ve dropped it off to neighbours on one street and I hope to deliver the rest this week.²

My shame sometimes makes me think that I’m the only person in the world who has difficulties, but every time I am open and vulnerable I hear from others who relate to my experience. So, the odds are good that at least one of my neighbours will appreciate knowing they aren’t as alone as they might feel.

I’ve been thinking about doing this since last fall – it can up as an idea in my morning pages, but as of yet, I have been too afraid and ashamed of myself to do anything more than think about it. I have big fantasies of immediately making deep friendships, but realistically, it might not change much right away. I honestly don’t know what I would do if a similar letter was dropped off at my door. I’d like to think I would respond - certainly at this point in my life I would. But when I was working full time? When I barely had the time to sleep? When I had never imagined a future where I might need to rely on a lot of help from others? It might have stayed at the bottom of my To Do list. As someone who still mostly only has energy to stay at home plus one 1km³ walk around the park each day, I must take this risk if I want to make more connections. Only time will tell what happens, but I choose to remain hopeful that this will be a positive development in my life – and ideally theirs too.

If I do make connections with my neighbours, I also hope that my work on thinking about apologies, needs, boundaries, guilt, shame, compassion, empathy, and forgiveness will give me a good foundation for dealing with disagreements and challenges. Being open about my needs and boundaries without shame will hopefully reduce conflicts from the beginning. I now also know that there is a spectrum of types of friendships. I may not become close friends with my neighbours, but that doesn’t preclude a relationship where we are there for each other in times of needs.

The Letter

Hello!

I’m Kate at [address] – daughter of [parents’ names]. I wanted to introduce (or reintroduce) myself.

Just before Christmas in 2021 I contracted covid and I still haven’t regained my health. Last summer my partner couldn’t deal with my illness anymore and ended our relationship, which is why I have retuned home. I’m being treated by a cardiologist for POTS and on a waitlist for an immunologist as the cardiologist thinks I have MCAS, which means my immune system is dysregulated and reacts to many should be-benign triggers, including tomatoes and humidity, as well as known dangerous triggers, including all viruses. The treatments I have started with my cardiologist and family doctor have increased my capacity a great deal, but I must be very careful to pace myself throughout the day and keep my heart rate under 120bpm as much as possible. I’m not able to work, but I’m no longer confined to my bed as much as I was when living in Toronto, so that is a blessing. It’s possible you’ve seen me walking very slowly at the park as I try to rehab while staying within my energy limits.

As much as I can, I would like to contribute to the neighbourhood community. I’m limited by funds and energy, but here are some examples of things I could do if you (including kids!) find yourself in need for any reason:

• Take out/bring in garbage etc.

• Pick up your mail

• Sign for parcels if you won’t be home (I’m almost always home)

• Commiserate about illnesses

• Commiserate about the Blue Jays season

• Listen if you need to vent

• Listen if you want to share good news!

• Listen if you need to practice a presentation, job interview etc.

• Help with internet research

It’s very important that I reduce my chances of getting sick by any kind of virus, so I’m hesitant to share indoor space with others. But with masking, and good air ventilation/purification, I could help with indoor stuff like:

• Sorting/organizing documents and photos etc.

• Keeping you company while you do chores (they are often so much easier to do when we’re not alone!)

• Feeding pets/watering plants etc.

I should mention that I have aphantasia, which means I can’t form images in my head, which leads to face blindness. If I don’t recognize you at first it isn’t personal!

My contact info is: [email address] and [phone number]. My phone is set up so unrecognized phone numbers go straight to voicemail, so it’s best to text first, or I will call back if you leave a message. And if you are like me in the sense that you don’t want to inconvenience others by asking for help, I promise you’d be doing me just as much of a favour by helping me figure out how much I can do in a day as my capacity increases with treatment. It’s a win-win situation!

I hope you enjoy the rest of the summer,

Kate

1. Obviously, as I have detailed over the past few weeks, we had bigger issues than a lack of outside support.

2. Because of the previously mentioned trauma and anxiety, this activity is really hard and spikes my heart rate. I’ve had to break up the task so that I don’t put myself into a crash, which is the last think I want to have happen.

3. 0.621371 miles.