Beyond The Bullshit Of ‘Too Bad, So Sad’: On Life With Chronic Illness and Disabilities.

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So you have a new chronic illness or disability and now your world has changed. I’m so sorry you’re facing this situation. You’ve probably not had time to adjust yet and you had no way of knowing that you’d be going through this.

You’re facing illness, potential disabilities, psycho-social adjustment to your new reality and medical trauma as well. Things may seem overwhelming.

In 2018 I was diagnosed with a chronic illness and disability: Ehlers-Danlos Syndrome. As I pushed for diagnosis and management of my condition, it also became apparent that I was also facing multiple comorbidities: autoimmune progesterone anaphylaxis, ongoing migraines, hernia, Raynaud’s syndrome, bursitis, and a shoulder fracture. Due to lack of movement for many years, I had extreme physical de-conditioning. I had treatment needs I couldn’t recognise at first. I didn’t know how to access referrals and rehabilitation at the start. And while I’m not ‘fixed’, I’m doing a damn lot better than I was in 2018.

So I want to share some of the techniques I learned for living with chronic illness and disabilities. Of course, this is a non-comprehensive list. I hope it’s helpful.

1. You’re a person, not just a patient. Your life is more than just your medical condition or disability. Don’t lose sight of that.
2. Keep records of everything. List all your conditions, keep copies of medical files, keep copies of scans and pathology reports.
3. Write up your personal medical history, medications and family history. Print it out, put multiple copies in your folder. Take your folder with you to each specialist appointment. Hand a copy to each new medical specialist you meet.
4. Join patient advocacy groups. Create your own if none exists. Learn from other people what worked for them. Don’t be scared to create a separate unofficial little space of folk just like you that you can relate to. You don’t have to join the mega-group on Facebook if that kind of space doesn’t work for you.
5. Research what works for others with your condition. Learn from their experience. Check medical journals and patient groups for management options and therapies that are accessible to you.
6. Advocate for the care you need. If you struggle with basic self-care, seek external supports or the funding you need. Start talking to agencies and organisations that may be able to help you.
7. Rehabilitation and physical therapy should be affordable, accessible and tailored to your personal needs. One-size-fits-all rehab can be dangerous and cause injuries. Find a physical therapist and occupational therapist who can work with you at the level of movement and recovery that you’re at. If you’re in intense pain after sessions, reconsider if it’s the right form of therapy.
8. Find ways to manage pain. You cannot heal or get stuff done when you cannot sleep or function properly. Seek a referral to a pain management specialist or clinic. Research ways that people with your condition(s) manage their pain.
9. Plan ahead. Sometimes caring for yourself in chronic illness is difficult. Stock up on meds and scripts. Put meals and soup in your freezer. Write out a daily routine if you need to. Basic care is important. Just because you survived an acute illness doesn’t make you invincible. If you don’t drink enough water, you’ll get dehydrated. If you don’t shower, you risk skin infections. If you aren’t eating healthy meals regularly, you’ll risk nutrient loss and will feel exhausted. If you aren’t regularly rolling over in bed, you risk bedsores. If you’re not moving, you risk de-conditioning. Try to find ways to meet your basic life-sustaining needs.
10. Don’t be afraid to ask for help. If you don’t get help, speak up, try again, even if your voice shakes. You shouldn’t be sitting alone in pain every day.
11. Find a doctor who can manage complex conditions. Not every doctor you meet will be able to do this. Some simply don’t have the skills, other will be reluctant to take you on as a patient because of the amount of time it takes to manage complex health conditions. You need someone who can write referrals, send off pathology and scan requests, and will treat you in a dignified, respectful and compassionate manner. Don’t be scared to ‘road test’ doctors. Have a short appointment to meet with potential doctors who might be able to support you long-term.
12. Lobby for better condition management, treatment and funding. Write letters to your local representative and healthcare agencies requesting outpatient specialist clinics for people with your condition. If they don’t respond, get a petition going. If they still don’t respond, start a media campaign. Remind them that elections are only so many months away and people with disabilities vote.
13. Find a counsellor or a psychologist to talk to about your condition. You’ve been through so much and while talking to other patients may be helpful, patient groups aren’t a great place to dump medical trauma — avoid making them toxic spaces, find a professional who can help you process your experience in a safe space.
14. Always treat medical staff and healthcare workers politely. It may seem difficult to smile or a crack a joke when you’re in pain but… it will help you to navigate broken systems.
15. Doctors and nurses aren’t gods. From time to time, they make mistakes and get things wrong. Don’t expect a ‘Dr House’ to suddenly appear and fix everything. Your condition might improve or worsen or maybe just stay the same, but what matters is working on your day-to-day quality of life. Don’t rest all your hope in doctors ‘curing’ you.
16. If health workers behave abusively, end the consult and leave if you can. Make sure you make a formal complaint. Reporting abuse is a safety mechanism: it’s worthwhile reporting it immediately as you won’t necessarily know what they’ll write in your file and how it will effect your future medical care. Reporting also potentially helps other people avoid abuse. Seek alternative care options. Remember: no gods, no masters when it comes to healthcare. Find what you can control within the system. Figure out ways to gain access to better treatment. Make noise on social media about what’s not working. Find journalists you can work with to try to reform the system.
17. Nominate advocates. Bring them to medical consultations, ask their opinions, let them offer moral support (and possibly hugs.) Don’t go alone to medical consultations if you can avoid it.
18. You don’t have to put up with shit just because you’re unwell. Some people may put themselves forward as a ‘support’ and you’ll quickly discover they’re trying to control you or are bossing you around. Abuse is never ok. Set boundaries, call for help if you’re being abused by friends, family, advocates or healthcare workers.
19. Compartmentalise your medical trauma. So you had a horrible, no good, very bad, awful healthcare experience? Take a deep breath. Find a safe space: a park, a cafe or a quiet bench to take a seat on. If you’re in hospital, ask to close the curtains. Call a friend or advocate. Have something to eat or drink. Use any personal skills you have to re-centre yourself: meditate or focus on your breathing. Remind yourself that you’re worthy of being treated well and that the icky behaviour of some healthcare workers or doctors doesn’t define your self worth. You may find exercise or taking a shower or quiet down-time like watching a movie or listening to music will help you to re-centre yourself.
20. Do what you can when you can to maintain or improve your quality of life. Find small things that bring you joy that are not exhausting. Treat yourself with love and care and respect.
21. Create social networks outside your patient groups. You need ways to be involved in life that don’t simply refactor your identity as “person with disabilities.” Your new medical condition or disabilities are not your identity in totality — though it may feel like it at the start as you adjust.
22. Find yourself a bunch of cheerleaders. Let friends, family and neighbours know what you’re going through. Seek out people who love and care for you and make you feel good to be alive.
23. Check your medication interactions. Don’t expect that your doctors will always know the medication interactions when prescribing. If you’re unsure, talk to your prescribing pharmacist.
24. Consider doing less to get more done. Sometimes just doing one thing a day will be more useful than doing 20 things poorly.
25. Change your expectations. So you were a high-powered executive? A stellar athlete? An A+ student? Things may have to change. You might not be able to do all the things you used to. It’s ok to test yourself to find your new limits, but plan ‘buffer zones’ into your days after test days: you may find yourself exhausted or in pain and you may need to reconsider your capacity for work, exercise and study. Don’t beat yourself up. Chronic illness and disability is not a moral failure. You’re not required to ‘overcome’ disabilities or chronic illness with some superhuman 80's power-ballad montage.
26. Be gentle on yourself. Treat yourself like you would your best friend in need of support. Treat yourself like a child whose mother loves them and will sit by them through the darkest nights. You are going through tough times. It’s okay to speak to yourself in a kind, gentle voice to get yourself through the tasks you find hard.
27. Life goes on. Plan for the future. Dream. Take lovers. Start learning new languages. Enrol in courses or learn new skills. Take up pottery or knitting. Find new things to care about and give life purpose.
28. You cannot know what will happen tomorrow but you can still treat each day like it matters.