Illness and Belonging
A Reader’s Resources and Reflections on Quotes by Shahd Alshammari
Dear City Person,
In today’s newsletter, I will be sharing reflections that got inspired when I found peer support resources offered by
on her Substack newsletter called where she writes about her life as a person diagnosed with multiple sclerosis (MS). Click on the thumbnail below to see her newsletter and I encourage you to subscribe to it.
Jane happens to be one of my readers and I tend to have the fourth weekly post of each month mention a readers’ offerings, whether it is a publicly posted comment, resources, blog, newsletter, video, or social media post or anything they gave me permission to share. I may mention them in passing and share the reflections they inspired for me.
When Jane first subscribed to my newsletter, she told me in her comment on my first post, linked here, how she often thinks about:
“…community and belonging, now through the lens of living with a chronic illness which can be isolating.”
This reminded me of Shahd Alshammari’s book, Head Above Water: Reflections on Illness. So I thought to use this opportunity to also share in my newsletter today a few quotes that Alshammari had written about belonging as a Kuwaiti-Palestinian woman diagnosed with MS at age 18 who studied in the UK before returning to her birthplace of Kuwait and becoming a literature academic scholar. I also invite readers to discuss them with me and offer some prompts below to help if needed. Click here to learn more about Alshammari and click here to get her book (I do not earn any affiliate fees from this) .
Before I dive in…
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As mentioned in last week’s newsletter, which you can find by clicking here, peer support is a sort of social support mutually offered between people who share similar experiences and demographics. While this often happens live in peer-facilitated groups (which is different from groups facilitated by a healthcare professional where support is one-directional and where the facilitator may or may not share the experiences of group participants), it can also happen online via asynchronous discussion forums, WhatsApp message threads, Facebook groups, Reddit, or even through the comment thread of blog posts and newsletters like
.Mainstream discourses about emotional wellbeing too often focus on “emotional regulation” and “self-help.” I have seen this also show up in widely utilized psychotherapies like Cognitive Behavioral Therapy (CBT) where the individual’s capacity to navigate their thoughts, emotions, and behaviors are emphasized. As a psychotherapist myself, I have found that while it can be helpful and even empowering to build individual skills that help us navigate life’s challenges and traumas, it is also limiting when used exclusively at the expense of social support and community.
I have noticed how an excessive focus on “self-help” can be mirrored in currently able-bodied young people’s fears of ever reaching a level of disability that requires assistance. I wonder what would happen to those fears if more people lived in a world where seeking out mutual communal supports was widely normalized and accessible and not seen as “weak.”
At worst, the exclusive focus on individual emotional regulation can be exclusionary as not everyone can access it. Quite often, I have found psychotherapy clients who have experienced multiple childhood traumas and had little to no support from others may struggle with how to internally support themselves. To emotionally support ourselves, we need to first build a relationship with ourselves but this does not magically happen.
Rather, it is a skill that indirectly gets modeled to us through our relationships with others whether with our families, friends, romantic partners, or other people and even animal friends. I would add that this does not need to be limited to relationships in our immediate circle. People can form relationships with books, music, art, fictional characters, historical and spiritual figures, among many other things and these too can leave impressions on how we relate with ourselves.
It becomes easier to internalize a positive relationship with ourselves when we can “see” ourselves “within” other people—or in other words, when we can connect with people who share our experiences or who have parallel life experiences, even if this is not 100% the case. This can be challenging if one’s experiences are stigmatized in the society and if one’s narratives are under-represented or misrepresented in mainstream media, as can be the case with illness and disability.
A question for readers before I proceed:
When was the last time you saw a disabled character in TV, movies, or books that did not either pity them or place them on a pedestal?
Contrary to popular belief that suggests that if we had a poor relationship with our parents as children then we are doomed for life, I suggest that we are ongoingly being shaped by the different relationships we build with others throughout our lives. Sometimes though, I find that people may struggle to have these relationships translate to a more positive relationship with themselves. In this case, I find that consistently slowing down to savor and reflect on them whether alone, with others, or with a therapist can help but this takes time and cannot be forced. Some people may never develop a positive relationship with themselves and may need “co-regulation” which I would say is an under-appreciated skill that we can all benefit from.
Having said that, some people may not even benefit from any “regulation” whether in “self” or “co” ways. An example of this was eloquently expressed by Kai Cheng Thom’s post on Instagram below where she critiques psychotherapy’s excessive focus on emotional regulation and how it neglects those who experience ongoing oppression and lack of safety (click on the thumbnail to see the remaining slides). Sometimes what is needed is to prepare to fight and survive while making room for joy and community while facing danger:
Other people don’t need any of the above but they can still benefit from having a space to “reflect” and connect with what they value in life in the face of life’s challenges even in the midst of illness. This can be especially powerful when done in a group setting with peers.
Amid the diversity of psychotherapy approaches, research consistently shows that among the key elements to therapy being helpful is the quality of the relationship between the client and the therapist. In my experience as a therapy client, I have noticed that while I may forget the words of my past therapists, what stuck with me was the quality of their compassionate presence with me which indirectly taught me to speak to myself more compassionately (though I am not perfect here nor do I think anyone can be!).
Psychotherapy though is not a “cure-all” nor is it easily accessible to everyone. Some people need practical tools and resources and need to feel supported by others who have shared experiences to feel less alone.
For some people, it can be more healing to internalize positive relationships with others who relate to them as equals versus as a “doctor-patient relationship” and “who get it” which can better translate to how they relate to themselves. This can be more so the case with something as isolating as experiencing chronic illness and disability in a world designed for currently healthy and currently able-bodied people. Alshammari adds:
“To survive, one must find solace in a third space of belonging. You are already outside of the dominant narrative, outside the margins, away from the centre.”
In peer support format, Jane, who used to work as a librarian, has a “Resources” tab on
where she shares online peer support groups on MS, blog posts written by others diagnosed with MS, mobility aids, and resources offered by clinicians. She also does not center herself as the expert in everyone else’s experiences when writing about her personal experience and invites readers to contribute their resources. You can find her resources tab by clicking here.You may have noticed me using the words “currently” able-bodied and “currently” healthy. I learned this through a fellow psychologist who is a lot more well-versed than I am in disability justice. When I first heard about this, I thought about the following quote below from Alshammari’s book which had me think of how often currently able-bodied and currently healthy people project their fears of inevitable disability, illness, and death on disabled and ill people, thereby distancing themselves from a shared humanity:
“Accusing the ill person for failing to behave, failing to be strong enough, successful enough, failing to swim, leaves the healthy and able-bodied feeling safe and secure. They are at the shore, sunbathing, while the rest of us are trying not to drown. But the possibility of the tide coming in and covering the edge of the shore, or even a tsunami overwhelming the beach, is always there.”
Before I share one more quote I loved from the book, I have these questions for readers:
Have you ever caught yourself distancing yourself from other people’s experiences that you do not understand whether it was related to disability, health, ageing, immigration, violence, race, gender, or other experiences?
What did this look like for you?
What helped you notice this and reconnect to a shared humanity while acknowledging the uniqueness of each person’s experience?
Here is one more quote from the book that stood out to me and that I find can resonate even for people who have yet to experience illness or disability. It is also relevant for people in peer support which, as mentioned, relies on mutual support rather than being a “helper and helped” dynamic:
“We are given our selves back by giving (…) The trick was to give what you could.”
At the time I read this, I thought of some of the psychotherapy clients I worked with who would go above and beyond in social and work circles where their giving was not honored to the point of burnout. I saw how the burnout can be compounded for those who experienced health conditions especially chronic pain and chronic fatigue. I noticed how this burnout would at times have people become self-focused which can initially be empowering in the short-term but isolating in the long-term if it happens at the exclusion of relationality.
I find that there is a difference between relationships that look like a “me versus you” and those that look like a “we.” I have observed that some people, especially those who experienced exclusion, may have internalized the idea that a “we” is the same as a “you at the expense of a me” because the latter may have been the only way they could connect in dominant groups that exclude them.
Re-reading the above quote now has me think about a Substack post called “Practicing Reciprocity” which is in
newsletter written by another reader and fellow psychologist, which you can find below along with my takeaways:
I learned through Li’s post that giving is less likely to lead to burnout when:
…it happens within a larger culture where mutual giving is taking place
…it is seen as the gift that it is as Li mentioned in her reply to my comment about how often certain people are forced to give to the point of sacrificing themselves while others get away from solely prioritizing themselves at the expense of other people.
Here are my last questions for readers:
What are your takeaways from my post, Li’s post above, and/or Jane’s Substack?
Think of relationships where you experienced a “we,” a “me versus you,” a “you at the expense of me,” and a “me at the expense of you.”
What are the signs that tell you when a relationship has shifted to any of these ways of relating to each other?
What do you do when you notice this shift?
Next week’s newsletter will feature my reflections on a blog post by Happy Cities about being culturally informed when designing urban communities in the United Arab Emirates (where I am based) and the consequences of importing Western models on community connections.
Before I wrap up this post…
Last week, I forgot to share a randomly drawn conversational card as I had promised I would in my post about conversational cards (which you can find by clicking here)! So here is the question on the card I just randomly drew now from Scenario Cards:
“What if you could fully comprehend two specific things in all their detail and complexity? What would you want to know everything about?”
Let me know if you end up using this prompt in any of your conversations and how it goes! Click the link here to learn more about Scenario Cards. I currently earn an affiliate fee for every purchase from this link. This is so far the first affiliate partnership I have and I only plan to do so with products I genuinely benefited from. I had written my post about Conversational Cards prior to being invited to their affiliate program which shows that this was the case for me with Scenario Cards.
Wonderful piece! I had so many associations to it, so evocative, thank you. I thought about cultures that allow community members to let it all hang out in grieving - aren’t threatened by periods of dysregulation. Will read this again.
I just started “Head Above Water” so thank you for the recommendation Reema. The quote in your piece where she talks about finding solace in a third space of belonging, outside the dominant narrative really resonated. I think it’s true there is another space to inhabit, or belong when living with chronic illness or disability. For me it’s starting to feel like more than solace but a new way of looking at the world, strengthened by the new communities I’ve found online, by my own acceptance, and determination to find different ways of doing things.
Disability representation in TV, films etc is really interesting to me and I applaud you for raising it. There is such a long way to go on this but there are some sparks of change - a brilliant example of representation that doesn’t follow the tired narrative of pity or hero is the recent Doctor Who anniversary series in the UK: https://www.whizz-kidz.org.uk/news/the-tardis-has-a-ramp-why-ruth-madeley-in-an-accessible-doctor-who-means-the-universe-to-us/
Thank you for the work you do 💛.