This post is the third of a collaboration series with the amazing Lori (@budtobloomlori). Lori (they/them)is a disabled model, and creative who uses the mediums of writing and art both as an outlet, and a way to raise awareness about life with chronic illness. Some of the conditions they live with include Ehlers-Danlos Syndrome, PoTS, MCAS, and mental illness - all of which have been discussed in detail over the course of their 3 years as a writer. They recently created a petition addressed to the UK Parliament regarding eating disorders, and are still taking signatures. You can find Lori's Instagram here and their latest blog post here!
When I first fell ill, I did so following the onset of puberty at age 13. I had struggled with symptoms of my condition all my life, and with hindsight, it’s clear to see how my disorder would manifest and develop over time; despite being considered a healthy child. But I have a genetic disorder that affects collagen, so the combination of my increased estrogen levels, a significant growth spurt, and genetic abnormality, wreaked havoc on my body - and subsequently my mind - which has motivated me to advocate for mental health awareness from a disabled perspective.
A lot of people are born with their disabilities, they have been present since birth - and many also acquire disabilities; and as someone who technically acquired my disability despite being born with the genetic mutation, I can only speak from this point of view; so please keep this in mind going forward.
Long-term health conditions and disability can be difficult to manage for a plethora of reasons, and feelings of distress and loneliness are felt throughout the disabled community. In this blog post, we shall be looking at some important mental health figures which serve as a reminder that poor mental health and long-term health conditions go hand in hand - and not just because of the difficulties associated with symptoms.
Mental Health and Education
My education was majorly affected as I was in too much pain to go to school, my school was inaccessible and I had to drop many subjects because this was a time before the online learning programs we see today, but after talking to my friends and fellow spoonies in the chronic illness community, I’ve discovered this is a widespread issue, which is shocking considering the importance of education, particularly during childhood.
This caused a significant level of stress and pressure upon me, especially considering I was a driven and dedicated student who still to this day has a perfectionist streak and bold goals. Goals which I lost sight of because they felt entirely unachievable, my health was deteriorating fast, I was losing friends because the socialization and convenience weren’t there anymore, and people moved forward. I felt unwanted, unlovable, unattractive.
People I went to school with made up all sorts of rumors about what happened to me for the sake of gossip, but no one reached out to ask if I was okay. It was like my illness was an elusive, mysterious, and salacious slice of drama pie and not the very real and valid experience for which I myself had no answers. It was the beginning of many instances where my disability and symptoms were talked about like a scary campfire story, disturbing in nature.
The shame which resides within our minds caused by internalized ableism, the fear of being a disappointment to our families, the distress we feel when we lose the abilities, we’ve come to rely upon to fulfill our needs for independence - it’s exhausting, and I have personally found myself mistaking my frustration, suffering, and grief as my body’s fault; thus, diverting my anger towards my body. Over time, this damages our relationship with our bodies and disabled identity. This in turn affects our self-esteem, and the ableism, stigma, and discrimination we encounter can all be reasons why our mental health can suffer as individuals with LTHC’S.
Mental Health and Inaccessibility
Living with a long-term health condition can lead to us being lonely and socially isolated because of how inaccessible our communities can be, and disabled people are statistically less likely to have as much disposable income when compared to non-disabled folks. In fact, on average disabled adults face extra costs of £583 per month, and 1 in 5 faces extra costs of over £1000 a month even after they have received welfare support designed to meet those costs. [Source: Disability Price Tag report, 2019].
Something which I find the most stressful is the lead-up to big appointments for which you have to make lists of what to bring, what to mention, what to ask. The stress and anxiety I feel are large because of the big appointments, reviews or an appointment with a doctor you don’t know can bring up a lot of residual feelings which I feel stem from medical trauma. Like many young chronically ill people, I was disbelieved, dismissed, and judged by the pediatric clinicians I met. I used to cry myself to sleep the night before these appointments, or not be able to sleep at all because my generalized anxiety and internalized ableism were waging war with my mind. All this stress, anxiety, fear, and pain can be something that forms into a constant without the appropriate support and vigilance.
In fact, current research shows that those with long-term health conditions are more than twice as likely to develop poor mental health, which subsequently makes it harder to manage our physical health.
More than 15 million people in the UK - 30% of the population - live with one or more long-term conditions, and more than 4 million of these people will report having a mental health problem.
People with chronic physical health conditions are more likely to have lower well-being scores than those without.
Amongst those living with a severe mental health condition, 37.6% have a chronic physical condition, versus 25.3% of people without/with minor mental health issues.
Comparing Well-Being Scores
On average, disabled adults have worse well-being scores than non-disabled adults on the four well-being measures. When evaluated, data from June 2019 showed the average scores from the measures were:
1. Happiness yesterday: 6.54 out of 10 for disabled people, compared with 7.71 for non-disabled people
2. For the feeling that the things done in life are worthwhile: 7.09 out of 10 for disabled people, however, it was 8.03 for non-disabled people
3. For life satisfaction: 6.68 out of 10 for disabled people, versus the score of 7.90 for non-disabled people
4. For anxiety yesterday: 4.27 out of 10 for disabled people, but it was 2.66 for non-disabled people (larger scores translate to poorer states of wellbeing for this measure)
Infographic citation: [Source: Mental Health Foundation]
Blog post citation: Mental Health Foundation. n.d. Mental health statistics: physical health conditions. [online] Available at: <https://www.mentalhealth.org.uk/statistics/mental-health-statistics-physical-health-conditions> [Accessed 16 September 2021].