New to living with a disability? A guide

In the 3 years since I “became” disabled – (this is not as definitive an event as one might think given that I’ve been pushing through fatigue, injury and autonomic dysfunction since forever), since I started being unable to stand and walk without pain – I have often thought “if only there were a walk-through of advice on adapting to this existence that bears little resemblance to my “previous life”.

The reason for this absense of information is almost certainly that every person’s experiences of becoming disabled/unwell is different and will depend on factors as far ranging as geographical location, source of income and existing familial situation all the way through to specific symptoms, the training of the healthcare practitioners encountered and their biases (conscious, or unconscious). All of these things and many more will impact on an individual’s journey.

Of course, there are commonalities too. Humans often follow similar patterns when grieving a loss, or when socially isolated or hurt…

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As the year draws to a close, I want to share some of the wisdom acquired through my experiences navigating the world as a newly disabled person. Be aware these are based on my own subjective experiences and those of friends within the chronic illness community. May your 2019 be most excellent and in the words of Slug, “when life gives you lemons, paint that shit gold”.

  1. Become your own hero – learn advocate for yourself. Not only is this pretty essential to your wellbeing if you do not have a parent or carer with full responsibility but is also empowering. I feel naive for thinking that if I ever became disabled/unwell, there would be the right support readily available to guide me past the hurdles. In reality, securing the things I need to live life with a disability and get answers to healthcare questions has been a battle that nearly killed me a few times. It’s a battle without end. There is rarely one definitive solution, but it should be viewed as small elements that can be chipped away gradually, diminishing the overall issues. I’ll do a post on how to advocate for yourself at a later date. Be aware: self-advocating is incredibly exhausting, so try not to pour from your cup unless frequently replenished with nutrition, rest and relaxation.
  2. You’ll probably lose friends and that’s okay. Not everyone will show you the compassion or thought you would show them if the boot was on the other foot. People have busy lives and their own battles and it’s easy for able bodied friends to overlook how your challenges can be truly monolithic. If their experiences are only of able-bodied wellness, how would they automatically appreciate how living with a disability/chronic illness can come with increased bureaucracy, chance of living in poverty, being in pain, losing your income, likelihood of being sexually assaulted, likelihood of mental health problems, discrimination at work, being discriminated against at interview, experiencing domestic abuse, problems using public transport, problems accessing goods and services, higher cost of living, having quality of life affected through discrimination, not being afforded the same luxuries as able bodied counterparts such as the right to marry without losing source of income, etc etc)? Of course, people with disabilities don’t stop having “regular” worries either i.e. relationship problems, maintaining friendships, debt, career worries, paying bills, bereavement, household chores, negative self image, dentist appointments, etc). Social media might mean people think they are aware of how overwhelming things are for you and a “like” or comment might feel like checking in, but when you’re going through something momentously life changing like becoming disabled, you need more from your support network, especially if your safety is compromised through say, inadequate housing or access to food and water. You have every right to cut them off. You don’t owe anyone an explanation. You will have some people who get the hump with you for cancelling  every time you arrange to meet. Quite simply, they can accept your reality or fuck off. No one needs to feel guilty for canceling in favour of prioritising their own wellbeing. However, some people will also come through in ways you never imagined and will make you realise you have friends for life. My friends KEEP inviting me to the gigs I don’t make it to 95% of the time. You will also find a beautiful, vibrant, supportive community in the online chronic illness world. These people will bolster you when you need it and you will get to know people living with similar experiences all over the globe. I cannot imagine just how difficult life was for people in my position before the advent of the internet.
  3. Find things you CAN do – lots of them so that you have options depending on your symptoms.
  4. Reassess your goals – view change as an opportunity. I did the same job for the best part of a decade, I’d done a vocation-specific Batchelor’s degree, I’d worked my way up from newbie to healthcare professional, to practice manager. I’d honed my skills and knowledge and trained others. When I had to stop doing that, it hurt that I’d “wasted” my time on something so specific. It had been hard graft too, I’d worked long hours with few breaks, appeased tyrannical bosses at the detriment of my own physical and mental health and dealing with challenging situations. Before I’d even quit working that job, I had enrolled in an Astronomy, Cosmology, Planetary science and astrobiology course and it has been one of the most incredible experiences of my life. It has made me a deeper thinker, a more scientific thinker, a more philosophical thinker. It has put my own life, my own pain, humanity and our planet in perspective for me. That is something I would never want to lose. I’m a long way from being well enough to work a regular job again, but I’m going to keep dreaming big and maybe one day I’ll be researching stellar or planetary astrophysics. So I’d say ask yourself… what are my interests? My passions? My curiosity? What would I love to understand better? Where do my skills lie? And what skills can be built upon? What career would the younger me have thought was cool? What would I have done if work hadn’t gone the path it did and I had the opportunity to start over?
  5. Be kind to yourself – learn to rest. This is very hard for anyone because our society often only values life if it comes with a side of productivity. No one wants to feel their life is wasted. It’s particularly tough if you’re someone who worked or had a physical vocation, especially if you worked long hours, pushed your body or if you have kids. It’s easy to feel like you’re wasting time when you are giving your body the rest it needs, but it’s essential to be able to utilise the better days fully. I find keeping a daily planner helps me to set short-term, mid-term and long-term goals: I try to keep them achievable and set myself deadlines. I include physio, meditation, laundry, reply to emails/messages (big social fatigue, not to be underestimated), washing, time to rest after baths/showers, meditation and study on my daily to-do lists. It’s impossible to do everything most days, but I try to not beat myself up if I need to shuffle jobs to the following day/week/month. A certain amount of flexibility is required to avoid becoming disheartened because there will never be enough hours in a day when you have few usable hours. This is something well, able-bodied people struggle with… why would it be easier for someone for whom things take longer? Just know that your value as a human is not determined by your productivity, even when you’re being told the opposite from every angle (including your own brain).
  6. Learning which mobility/daily living aids will be helpful can be expensive. Don’t get into debt trying things all at once if you can help it. It feels immediate, the need to get back to the place you were before, the person you were, but chances are, there is no magic pill. There are a lot of options out there and it takes a lot of (expensive) trial and error to find the right tools to support you. So, take it slow! Getting out of debt is hard.
  7. Keep a diary/numerous diaries. This is important if you are seeking a diagnosis/needing to report to a healthcare provider. I keep a pain diary. It allows me to identify patterns, triggers, tools for better pain management and log events such as incurring injury (useful if I need to tell a healthcare practitioner when something started).  Other diaries (depending on your needs) can include food diary, physio diary, mental health diary, period diary, symptom diary, activity diary, sleep diary aaaaand poop diary!
  8. Get sleep in check as much as possible – Poor sleep is a common issue for well, able bodied folk, so throw in some pain, lack of melatonin through lack of daylight, stress, depression and bone-deep chronic fatigue and you’ve got a recipe for sleeplessness. Sleep is the foundation for pain management and good mental health. Without it, everything is harder. I have a post about improving sleep hygiene coming very soon.
  9. Set boundaries. Learn to say no. It will take people a long time to understand what your needs are and the learning process is fraught with alienation, misunderstandings and upset. Unless someone is living in your skin 24/7, they won’t be aware of the impact minor, seemingly insignificant actions can have on your wellbeing. Ultimately, it you who must face the aftermath of pushing on through pain when it doesn’t feel right. No one else. So don’t be pressured into things you are not okay with. Don’t be afraid to make your needs known and guide your loved ones. They almost certainly want to learn because they love you and feel helpless.
  10. Be mindful of social media use. When you are at home more than/unable to socialise as much as most people, conducting most social interaction through the internet, specifically social media, it is important to be aware when it is affecting your mental wellbeing negatively and remember most of what you see is not real… it’s a highlights reel of ordinary people’s ordinary lives. People only show what they want you to see.
  11. Keep your mind active. Brain fog and mental fatigue make you feel like you’re losing your marbles and that is in many ways, a bigger hit to your identity than physical challenges. See the list of hobby ideas below.
  12. Know that you will likely become a different person. Living with a disability/illness is hard, it shows you sides of humanity and life you maybe hadn’t seen before. You see the ugly in people more. You see the kindness of others more. It’s very intense in both positive and negative ways. It may feel like your life follows a before and after/BC and AD timeline. You recall who you were and what life was like before, mourn the goals and dreams it now feels are unobtainable. Mourn the friendships you thought were stronger than this. Mourn the physical abilities you have lost, the days you could grip better or run on a treadmill. By the time you come through the mourning, it feels like you’re a different person. Maybe more jaded, suspicious and guarded. But you may also be more determined, mentally strong, compassionate and aware of your own positive attributes. And not suffering fools gladly is not a bad attribute to pick up. Just try not to let life harden you so much you lose yourself all together.
  13. Invite unapologetic joy into your life at every opportunity. Listen to beautiful music, taste every flavour the world is offering, surround yourself with sensory pleasures whether visual, auditory, olfactory, or the rest. If you can cook, have sex, laugh, stargaze, be awed by nature, feel cute, love and experience, do it…. whenEVER possible. The opportunities to experience joy can be harder to find when you’re met with so many obstacles. Therefore, there is no point in waiting for it to reappear at a later date. Grasp that shit with both hands (if you don’t have both hands, teeth, thighs, your Vulcan mental skills, whatever you have). Life is FULL of beauty and rich experiences even when it’s hard
  14. Keep going. Whatever life keeps throwing you, just keep going. Get out of bed if you can, do physio if you can, brush your teeth, wash your face, if you can get outside, do it and push forward. Always forward. Don’t expect it to be linear and don’t beat yourself up too hard when things don’t follow the path you want. There will be times you feel like it’s pointless or too much. Don’t give up. You are made of stronger stuff than you know or feel.

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Ideas for hobbies:

  • Learn a language. There are incredible apps now.
  • Study a new subject (Coursera is a fantastic free resource where you can do online courses by so many universities). Be discerning of your YouTube content because there is a lot of nonsense out there but there are worthwhile tutorials and educational videos in almost any subject. I’d recommend Crash Course, Sci show, Second thought, Kurzgesagt-In a nutshell, Big think, PBS Spacetime, Fraser Cain, Origin of everything, How to adult, Healthcare Triage, Khan academy, Bozeman science, Sci show Psych. I mean, this is my space/physics biased selection. I’m sure you’ll find your own.
  • Make your own cosmetics. It doesn’t need to be anything complicated or expensive and you can adapt it to your allergies, preferences and mobility level. It encourages investment in self-care and pampering, which I personally find, helps me feel better about other areas of life.
  • Teach yourself to meditate. A useful skill to get through life.
  • Get to know your family better (grandparents if you have them). Email is a useful tool to allow contact from afar.
  • Investigate your ancestry.
  • Find new music/films/podcasts/books. The magic of algorithms means you don’t have to do all the work anymore. There’s nothing like the satisfaction and joy of finding new music that you love.

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Gold lemon featured image art by Kami Legits.

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