Gentle Reminders for Chronic Illness Warriors

This post marks the beginning 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 discover more of Lori's work by visiting their blog, Instagram, petition page, or Patreon.

This series will be focused on chronic illness and mental health, follow along next week to read more from Lori!

Uphill battle; wading through treacle; running on empty; all analogies I’ve both used and frequently heard when describing living chronic illnesses. Of course this doesn’t mean that we perceive life as being “all doom and gloom” - but there are definitely times where our own personal struggles do make us feel hopeless and metally clouded by the distress, grief, and strain associated with being chronically ill. Which is so valid, and your feelings and experiences are worthy of acknowledgement and attentiveness.

However the sadness and frustration we can feel resulting from experiences that are connected to our disabled reality (think societal ableism, medical gaslighting, disability discrimination, prejudicial attitudes, and relationship breakdowns) - can be misunderstood as our disabled self, our disabled body, and the communication of our experiences, being the reasons why we’re subjected to this. In reality it’s mostly to do with the lack of support, understanding, inclusivity, and accessibility in our society; not to mention the symptoms we experience because of the condition(s) we live with. But nevertheless, it can be difficult to recognise the ways we perceive our impairments and inability to do certain things as our fault, or identify it as a weakness or defeat.

So with this blog post, I hope to serve you wonderful readers some examples of gentle reminders you can use to remind yourself throughout the day, especially when things feel particularly difficult or overwhelming.

1. Your disabled body isn’t a bad body

We can mistake our symptoms and the difficulties we face as our bodies being at fault for not being able to function like that of non-disabled folks, or those with fewer limitations than yourself. It’s okay to be frustrated about things you’re struggling with, but it isn’t your body’s fault, and blaming it for these difficulties can negatively impact upon the relationship we have with our disabled bodies.

2. You’re doing your best, and that’s good enough

I think I speak for a lot of people when I say this, but I continue to hold myself to the standards expected of non-disabled people. I still often realise that I have a bad habit of holding myself to both my past achievements, and those which many people my age are achieving. This year I’m going back to school to get my degree and advance upon my diploma, but as a 21 year old - I see lots of people graduating this year, having had a job, travelled abroad with friends, lived out, and learned to drive. But although these are bigger life events, when I have a bad day and struggle with basic tasks or have to cancel plans, I feel frustrated and angry too.

This is understandable because chronic pain and grieving the life we once thought we’d have is difficult; but it’s crucial that we recognise when we’re investing this stress into mentally berating ourselves for not doing ‘enough’, or worrying that we’re a disappointment. Which is why I feel this is a particularly pertinent gentle reminder to include in this here blog post, as we are seeing a lot of social spaces reopen without the accommodations instated at the beginning of the pandemic, which made events and experiences more accessible to disabled people

3. You don’t have to make up for the fact you’re disabled and

4. You have nothing to prove to those who have doubted your abilities because of your disability

When I was in college, I was the only mobility aid user in my class. At least from what I know, whether or not fellow students required this equipment during their own time is both none of my business, and unbeknownst to me. However, I did feel like I stuck out like a sore thumb at times. But like many disabled people, I felt that I needed to make up for the fact I couldn’t walk, go on nights out, or stay at a friend’s house because I couldn’t manage stairs, or even explore many areas of my city because of inaccessibility. I did this by trying to make people laugh, and studying like there was no tomorrow. It was certainly a mechanism to cope with my fear of being a failure (ouch the internalized ableism), but I just wanted to make people proud of me, and prove to the world that I was capable. But I just needed to invest this energy into understanding why I felt the need to overcompensate; why I didn’t see myself as enough, and why I felt the need to prove to people with ableist beliefs that I wasn’t the person they thought I was - in reality I didn’t even know who I was or what I wanted.

5. You don’t have to answer invasive questions or hear out unsolicited advice from anyone, especially strangers

I recently started creating and uploading my mini series titled “sassy disability” - in which I share some of the things I have been told or asked regarding my health and disabled reality. I try to take a sassy and satirical approach to answer their questions with some of the ways I navigate these situations when I have had just about enough. So far I’ve had an incredible reception from fellow disabled people, and it further goes to show the similarities in our experiences, ones which bring us closer as a community because they’re shared and understood. But if there is anything I’m taking away from this series, is that I’m certainly not alone when expressing how I feel a pressure to appease and pacify these inexcusable interactions so that it’s over quicker. You are under no obligation to answer these questions, or any question relating to your health that you feel uncomfortable answering.

6. Using your mobility aids and taking medication isn’t a sign of weakness.

Growing up I saw my amazing grandparents flourishing throughout their late seventies and early eighties, but this certainly wasn’t without hiccups along the way. At one point they struggled to do the stairs yet refused to get a stairlift because they thought of it as a sign of giving up.

I understand this as being a generational view on disability, because the world was much less inaccessible, and the provisions for disabled folks were nothing like they are today; which is saying something!

This was something which stood out to me, I didn’t understand why it would be thought of in such a way. Until I fell ill and became disabled. Then telling your friends you’re taking pain meds and antidepressants, needing to use mobility aids, joint supports, and use incontinence products caused an element of embarrassment. I too had internalized the stigma surrounding aids and medication, and sadly there were occasions where people had expressed negative opinions when I had shared. But even though you may feel a residing sense of hesitation, if you benefit from using these tools, please continue to remind yourself that supporting your wellbeing in this way is certainly not synonymous with weakness.

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