Before I was disabled, I would say I had a very social life. I was seen as someone who was always doing something. But in reality, I am a massive homebody who loves to go into frequent hermit modes.
I went out constantly: with friends, co-workers, and even to concerts by myself (which I highly recommend), but I still felt like I didn’t have a crew of my own in Los Angeles. I met most of my friends and acquaintances through my ex-boyfriend or through work.
My main resolution for 2018 was to find a solid group of friends, work on rebuilding, strengthening, or establishing clear lines in my relationships. It started off really well! I was putting in the work and then removed a huge person from my life. Although soul-crushing at the time, it was necessary and long overdue for both of us. I started really nourishing my relationships with friends, family, and mainly myself.
I had been making the mistake of holding my self-respect and self-worth in the wrong places and it showed. I was living my life for other people, off their emotions and opinions which just increased my insecurities. I put myself in compromising positions and situations, ignoring my own feelings and desires knowing damn well if someone else was in my position I’d slap them. I didn’t love myself and my depression just continued to spiral. So, I started working on my relationship with myself, making myself whole again first and then worked outward. I was a busy, busy girl: flying back home to Chicago more frequently, going to places off my bucket list, and I even planned a trip to Spain, Morocco, and Australia. But the sicker I got the more my social life started to diminish.
I’ve always been a person with many “long distance friendships.” Most of my closest friends live on the other side of the country or even in different countries. It is very rare that we’re ever in the same time zone, which causes breaks in communication but never disvalues the strength or significance of said friendships. Communication breakdowns seem to be common in anything that is long distance whether it’s a platonic relationship or a romantic one. But for me, those types of relationships tend to come with ease and feel more impactful.
This is especially true now that I’m staying with my mother in Arizona while on Medical leave (FMLA). On bad health days, when I can’t leave my bed nor have the energy to go out and have face-to-face connections, a lot of our communication relies on social media: Instagram, Facebook, Snapchat and Twitter. While most people complain that social media makes us less social or unable to interact with others in real life, I disagree. I think this argument comes from a very ablest viewpoint and there are levels to social interaction, and to be honest it was a similar viewpoint that I used to have when I wasn’t disabled. Many disabled and or chronically ill people benefit from social media in many ways, especially when it comes to having a human connection.
Between June and December of 2018, I had about 7 hospital visits and stays and ultimately moved to stay with my mom so she could be my caregiver. When I was still in LA, I noticed a lot of invites disappeared due to places not being wheelchair accessible, or I would receive messages like “I would invite you but you’re sick.” And on days when I could not get out of bed, I had to cancel the plans I did make (or) that I was invited to. I have never felt so lonely in my life. I felt like I was in a bubble and all my friends were out living life and going out while I was stuck in bed with my life on pause. There were friends that came to hang out at my place or visit me in the hospital even though it was hard to see me in that state. I’m super grateful for those visits because there is only so much Grey’s Anatomy and Netflix a girl can watch without going stir crazy. I honestly wanted to delete all of my social media accounts — just to take a break and not have the constant reminders of all the parties and events I was no longer invited to.
I’m so happy I didn’t delete my accounts because that’s where I stumbled upon a tweet that led me to rely on my internet friends and long distance friendships.
I joined support groups for people with the same autoimmune diseases as me and followed more chronically ill and disabled people online. I no longer felt alone — it was like a whole new world opened up. I started to be more vocal on my own experiences, without 100% committing to my reality. I honestly went through the stages of grief, and always returning to denial. “It’s fine, this is temporary,” “I’ll be out of my wheelchair, and I’ll be back at work at X date.”
And then there was setback after setback.
I got a blue placard and had to go on long term disability and then the depression really set in. According to Scope; a disability equality charity states 85% of young disabled adults feel lonely and more than 50% of working age disabled people who have been lonely in the past year say they deal with depression or anxiety. Once again I had become a statistic; I was officially a disabled person with an incurable autoimmune disease. Social isolation is a very real problem among disabled people; in the UK, two-thirds of people feel uncomfortable talking to a person with a disability. Hearing that statistic scared the shit out of me, especially when I thought about dating. If two-thirds of people don’t know how to communicate with a disabled person, did this mean I was going to be alone forever? I began to compare my life to others around me, freaking out about dating and my bubble just kept getting smaller. Because of all the outside judgments and stereotypes thrown at me the internal ableism was mad real, I focused so much on what I’ve lost and not what I’ve gained.
And then, frankly, I just stopped giving a fuck! I already have a limited amount of spoons, so I decided to stop wasting them on irrelevant things, things I didn’t have control over. I think the biggest shift was when I recently stopped planning my life for when my health gets better or when I’m out of my wheelchair. I decided to just enjoy life in my current state even if I don’t get better, I didn’t want to waste life on what if’s. I have chosen to accept and adapt to my truth; I am a disabled woman. I accept that for the rest of my life I will need to rely on mobile aids once in a while and be subject to oppressive attitudes toward invisible illnesses.
I knew that my circle cared about me and the ones who weren’t intimidated by my disability have truly been there for me. I also had to learn that some friendships were rooted in tokenism; where they felt like they should be there for me because it was a good idea or because of how it would make them look or feel, instead of being there because they genuinely want to and want to support me.
When I realized those things, I was broken because it was like I was no longer the same person in their eyes, and made me question those entire friendships altogether. I ultimately shrank the size of my friend group. According to Scope, about 21% of 18-to-34-year-olds avoid talking to disabled people because they aren’t sure how to communicate with them. I think that was a huge part of why a lot of friends disappeared — maybe they weren’t sure how to talk to me anymore without being offensive, and some even made snarky comments. They didn’t realize that being disabled isn’t a bad, horrific thing, but the fact that society isn’t accessible at all is what sucks.
So if you’re someone who doesn’t know how to talk to a disabled person, or if you have a disabled relative or friend, I ask you to do a few things to help the growth of these relationships:
- Take the time to research both visible and invisible disabilities and chronic illness to take away the awkwardness, pressure and give a bit of understanding. PSA: this doesn’t mean to send articles about some magical ritual that worked for some random lady in Wyoming.
- Take some time and read the Spoon Theory. It’ll help you understand what it’s like living with a chronic illness or disability. A lot of my family and friends have read this and reached out afterwards, it gave them a better grasp on things and has been very beneficial.
- Talk to us, we don’t bite. Invite us, check to see if there are accessible options. Just because we’re disabled doesn’t mean that we should be locked up like the Hunchback of Notre Dame. Can we just acknowledge how trash Claude was? There’s not enough time to unpack that here, just know we enjoy life even though it may be challenging.
- When we speak actually listen to us, respect us and take us seriously. As a general rule, before you ask or invade our personal space think of how you would feel if someone did it to you. Respect our boundaries, please.
- Be genuine. Nothing is worse than knowing you’re only our friend out of pity and sympathy. Ultimately, communication is key; the check-in text messages, the long phone calls, and FaceTime give us the ability to hang out from afar and eliminate the feeling of isolation.
- Understand that I am 100% okay with being a disabled Black woman. I’ve accepted that this is my life: the ups and downs, the fact that things I want to do may not always be accessible to me. But know that I’m still the same person, with the same if not more aspirations and goals.
Aisling Gill-Dougherty, a disabled undergrad with CP, stated it perfectly in the Breaking Barriers podcast when asked about feeling lucky to have a close, good, and loving support system: “She knows she’s lucky in comparison to general population of disabled people when it comes to her support from friends, family, personal assistant, etc. ‘When comparing myself to my peer group then I absolutely do not deem myself lucky, society makes me feel that I need to be positive about my disability in order to be seen as an equal and to challenge the stereotype of disabled people.’”
Although every disabled experience is unique, her words resonate with me so well, I am grateful I established my little crew. It may look different than before but it feels so fulfilling. When I think of my circle of friends, they are patient, true, virtual, global, and most importantly, they love me and all I come with. That’s all that matters! I can be honest and vulnerable with them without feeling like a nuisance, burden, or that I need to be positive and inspirational 24/7. My existence isn’t seen as inconvenient. I will continue celebrating true, honest and nourishing relationships in my life. So to these friends, I want to say thank you, I appreciate you and love you. You are worth every spoon.