Three years ago almost to the day, I was being wheeled out of Nelson hospital. A few times recently, I’ve caught myself saying “fuck, I wish I knew that before now.” So, here’s the top ten things I’ve learned since I became chronically ill and disabled.

This list is a mixture of practical advice for people who are chronically ill or have disabilities, and some of the things I’ve learned about myself and life over the past three years. It’s neither negative nor positive. The main reason I’m writing it is because these are all the things I really wish someone had said to me when I left hospital that day, and so this might be of use to others.

Illustration of me, by Hayley Heartbreak. This is absolutely not how I see myself, but it makes me feel strong, and grateful to my friends.

10. You need to be your own health advocate.

This is a pretty brutal truth really. It’s not easy to advocate for yourself when you’re vulnerable. But it’s a vital skill.

• Do not trust doctors to know everything about your conditions, your symptoms, or your medication. They don’t. When you’re in a  room with a doctor, you shouldn’t feel as if they’re in charge and you’re not allowed to ask questions.

• Always follow up. They may not have made the referrals or done the tests they said they were going to. If they haven’t, you might find you’re way down the waiting list. (This has happened to me numerous times, and it’s really frustrating. Just call them, or get someone to do it for you. Don’t wait then find out a month later they haven’t even done it yet.

• Ask to try different treatments. Don’t expect that they have offered you every option. If there’s something you’ve read about that you want to try, ask about it.

• Research every medication you’re put on. Don’t presume the doctor knows or has told you every single possible side effect or interaction. Be prepared and make informed decisions about what you’re putting in your body.

• Check your scripts before you leave, to make sure you have everything you need in the correct doses. Going back is time-consuming, expensive, and may just be too difficult for you.

• Always take someone with you. This might not be possible for every person all of the time, but if you can, take a support person to every appointment. They don’t need to say anything if you don’t want them to, but they can act as an extra set of ears, in case you miss something, forget something, or need to verify anything that was said.

9. Find out what health services are available in your town

– Ask, ask, ask. I have found out about numerous support services over the course of the last three years, none of which I knew existed. Many times, I stumbled upon them accidentally, or someone just mentioned them offhand. Some possible questions:

• Does your town have a Pain Clinic?
• Is there a hydrotherapy pool at your local hospital that you can use?
• Can you get physiotherapy through your hospital or GP?
• Is there free or low-cost transport for people with illnesses or disabilities? (Ie, we have the Red Cross van in Nelson).
• Is there any free or low-cost exercise programmes you could join if you wanted to? (We have the Green prescription in NZ).

8. Find out what financial support you’re eligible for

– Work and Income may not be proactive in letting you know what support is available. So read the list on their website, and when you go to an appointment, ask about specific benefits. This is another service where you A) Need to advocate for yourself, and B) Always take someone with you.

– Many people don’t know about the sorts of things they could use a Disability Allowance for. DAs can cover things like doctors’ fees, prescriptions, travel to appointments, alternative therapies like yoga, special food if you have food allergies, even heating. 

– You can also apply for a Disability Allowance if you’re working and not currently on a benefit.

– There can sometimes be some support from IRD. I applied for Financial Hardship when I first got sick, because I owed tax from when I was self-employed. They supported me on this.

– If there’s a Community Law office or a Citizens’ Advice Bureau in your town, they can often help with further places for support, and legal advice on your rights etc.

7. Medication: ask, ask, ask 

I have tested so many different drugs and drug combinations over the past three years. But I made a bunch of mistakes. Most of them could have been avoided if I asked more questions, such as: What are the side effects? What are the likely outcomes? and; Are there other options?

For example, the antibiotics I was given way back before I was admitted to hospital, caused my admittance. My system couldn’t cope, and I got a C. Diff infection, along with Toxic Megacolon (both of which carry a high risk of fatality) on top of the infection I was being treated for. I had had no idea that this was a possibility, however small.

To be fair, it’s extremely hard to ask what you don’t know. Back then, there’s no way I would have known to ask whether antibiotics could put me in hospital. I didn’t know how fragile my stupid body was/is, and I didn’t know anything about how antibiotics work. Now, I know both those things, and I will ask for and research every possible side effect and impact of any new prescription.

It can be useful for asks for ways in which side effects can be avoided. For example, your medication may come in other delivery mechanisms. After three years of being on and off the steroid Prednisone, which is one of the few things that helps my symptoms, I just got told that you can get it as an injection. And if you have the injection, you don’t get a lot of the side effects that make the oral format only a short-term option. So I can now get this injection every two or three months, and I get all the benefits with A) the side effects of the pill, and B) having to stop taking it, which sucks because of the withdrawal and return of my symptoms.

6. Find out what’s available to improve your physical environment

There is a plethora of products available for people with chronic illnesses and disabilities. Here’s some of the things I’ve been lucky enough to be able to invest in.

– WORKING

• I have a tablemate-type desk that I can adjust and use anywhere – in bed, on the couch, outside. It’s light and it means I can sit whichever way and whereever is most comfortable.

• I got a yoga/swiss ball for $10 from the Warehouse which is often more
  comfortable to sit on, and helps exercise my core and back muscles, which will help stop the progression of my disease. I have voice recognition software. I don’t use it as often as I should, but it means I can still write if I’m in too much pain to use my laptop.

– SLEEPING

• I was extremely, extremely lucky, (I still cannot believe this), that a bunch of amazing people fundraised the means for me to buy a pillow top mattress. It is probably the best thing I own.

-DAILY COMFORT

• Hot water bottles, heat packs, ice packs.
• Memory foam cushions.
• I just got a heated blanket from Kmart for $55 and it’s amazing. It’s like a normal fleece throw but it plugs in. Omg.
• Bottle/jar opener things. Do not be ashamed. Get them.
• An e-reader. Again, I was lucky enough to be gifted one. It is so much easier and lighter to handle than a book, and I can get almost any book I want without leaving the house.

5. Don’t let anyone shame you for your choices

This is your body, and your life. Everyone – and I do mean everyone – will have an opinion or an idea for how you can be healthier. Often, they are genuinely trying to be helpful. But their intentions don’t mean that you won’t feel like what you’re already doing to help yourself isn’t enough.

I’m here to tell you it is.

You don’t have to try every new product or idea or medication that someone offers you, whether they’re a doctor or a naturopath or your mother’s uncle’s best friend. You don’t owe them anything. You do not have to feel bad for nodding politely, and going on your way.

This is your body. You know it best, and you know how you want to manage your pain or illness or disability. Unless what you’re doing has direct impact on someone else’s quality of life, and you could make a change that positively impacts them and does not negatively impact you (and even then this is a real grey area) – then this is entirely up to you.

Do not let anyone tell you you’re not trying hard enough because you haven’t tried *everything* or you don’t want to try it their way. That’s just bullshit.

4. Mental health and physical health are not separate entities

This may seem really basic and obvious, but I grappled with it for a long time. Did my depression cause my symptoms, or did my symptoms cause my depression? How could I manage both of them?

The answer to management, for me, lies in two things: awareness – and access to professional help.

I need to be aware of how my body affects my brain, and vice versa. If I know that a bad pain day will probably also mean a bad brain day, I can do what small things I can to mitigate that. It kind of doesn’t matter which one comes first, in some ways. Just that they come together, which makes complete sense.

I am lucky enough to have access to a number of professionals who understand the connections – a GP, a rheumatologist, a counsellor, and a physiotherapist and a psyhotherapist if I need them.

3. The grief cycle is a cycle

Whether you’re like me and you got suddenly sick, or whether you’ve had a disability your whole life, you may experience grief about it. And the “stages” of grief are not, unfortunately, a tidy little narrative. But it can be really useful to identify them as they happen – and to let them happen.

I find that there’s often an expectation that I will be positive about what’s happened to me. Make the best of it, etc. And a lot of the time, that is what I try and do.

But I am going to experience shock. I am going to experience denial. I am going to experience anger. And, sometimes, I experience acceptance.

Those emotional states happen over and over, in any order, and sometimes all at once or in rapid succession. I grieve for my old
life. I grieve for all the things I lost – my job, the future I planned. I get fucked off that this basically happened to me because of bad luck and a genetic lottery. I get fucked off that I can’t do even a tenth of what I used to be able to do, and what I want to do now. I get terribly, terribly sad. I have days where I attempt to pretend that I’m completely healthy (and I pay for it dearly). I have moments where I can’t process how different my life is now or how I got here.

The times I experience acceptance feel amazing. It’s not like I stop fighting or trying to be more well. But I accept that there’s new parameters and I accept what I can achieve. I feel grateful for what I’ve learned, and for who I have in my life.

This is never false positivity. It is never gratitude that I got sick. It is never triumph or joy.

But it is peaceful and quietly optimistic.

2. Build a support network. 

This is so, so important. Hopefully, you already have friends and family who can be there for you in physical and emotional ways. But the most important thing for me has been finding friends who understand.

Squad goals

My friends have literally saved my life. No, I’m not exaggerating. If I didn’t have them, there’s no way I would have made it this far.

Many of these friends are people I knew before I was sick, and many of them are people I have met since, almost exclusively through the power of the internet.

One of the bonuses of the internet, along with it being a way I can more easily socialise and get and give support, is that I can meet people who also have chronic illnesses and/or disabilities. And so, I’ve been able to talk to people who get it, without me having to explain what this existence is like. That is inexplicably emotionally valuable. Plus, they can help in practical ways, like sharing info on new products they’ve bought or medications they’re trying or services they’ve discovered.

Don’t forget though – friends are not professionals, and it’s not really fair to expect them to be. That’s what a support network is. Friends, family, doctors, therapists, anyone else you need. A carefully woven web that won’t let you slip through the cracks.

And Number One: Your identity is who you are, not what you do.

This is hypocritical, because I haven’t learned this yet, I just know I should. And I’m trying.

My illness restricted so much of what I could do, and what I could do was who I was. My job was never just a job to me, it was my identity. Giving that up ruined me for a long time, and still does.

In Elliot Wake’s Camgirl, the main character loses the use of one arm – the arm she uses to draw. She’s devastated and furious with everything. Her girlfriend leads her in the forest, gets her to close her eyes, and asks her to describe what’s around them. She does so, with incredibly rich and detailed imagery. And her girlfriend says to her something along the lines of: “See? You’re still an artist, even if you never draw again.”

Who I am is not predicated on my ability to do anything. I’m trying to teach myself that me, just me as I am, is ok. I don’t have to achieve all the things to make myself worthwhile. It’s a really, really tough lesson.

*DEEP BREATH* So. This is by no means the full list of everything I have learned and am still learning. I could pretty much go on forever, especially about the emotional and social impacts of illness.

Everyone experiences these things differently. I hope that some of what I’ve said is even a little bit useful.

And when all else fails, look at pictures of cats. Or bears. Or racoons. Or dogs, I guess, if you must. (They should be pugs though. Fight me).

FEEDBACK FROM OTHERS

I’ve had lots of feedback on this post, which is great. There’s a few things they’ve added which could be really useful.

1. Learning to ask for help. I’ve written about this before. It’s very hard, and I don’t know that it’s something I’ll ever be good at. But obviously, it’s important. You need to know when to ask for help, and be ok with accepting it.

2. Look to see if there’s an beneficiary advocates in your area. The Beneficiaries’ Union website might help.

3. When you fill a new script, check with the pharmacist about any medication side effects or interactions. Pharmacists often have more information than doctors do.

See the comments below for more.