Advice I Wish I Had When I First Became Chronically Ill: For the newly chronically ill, from us old timers! Part 1.

A teddy bear holding a tissue and thermometer sitting by a medicine bottle.

Collaboration between Stef May, and Dax Everritt (Diary of a Disabled Person).

With COVID19 being a mass disabling event and NHS wait times leading to preventable chronic illnesses progressing or going undiagnosed, there are lots of people new to chronic illness. As people who have been disabled since 2016 and 2011 respectively, we’ve learned a thing or two and would love for our experience to be of use to those new to this. Of course, these things may work for some people and not others; these are just general bits of advice from us, two old timers, to the newly chronically ill, with all our love.

Part 1: Advice from Stef:

Patient Advocacy.

Learning how to communicate effectively with doctors and advocate for myself in appointments was hard, but a big lesson to learn. You deserve to have your symptoms taken seriously and not be dismissed by healthcare professionals, told you just have anxiety or stress, or are hormonal.

I started treating appointments like business appointments. I bring notes, I rank the new symptoms in severity. I keep the date (that’s always handy to look back on), I try to communicate my needs openly and do my research before appointments.

If there’s a drug or test I’d like to explore, I discuss it with my doctor. Having a doctor willing to listen helps; you can choose to see a different doctor if you are treated poorly. Bias and bigotry exist within medical settings.

Once I found the good doctors, I built a relationship with them where we worked as a team. This takes time and practise, but don’t let a doctor dismiss your health concerns. They deserve to be taken seriously.

Advocating is a great skill to learn; if you aren’t well enough, finding a good friend, family member or partner who is willing to come with you massively helps. Doctors are more likely to listen to you if there is a witness for their behaviour.

All the work that goes into this does eat away at your time and energy, and as you first become chronically ill you’ll start to see that a lot of your time is spent on admin!

Spoon Theory.

Spoon theory was a term coined by Christine Miserandino and is a great way to explain how living with limited energy feels to friends and family. It goes as follows;

Every day you’re given x amount of spoons, spoons representing energy. You have less spoons than a healthy person will get. If you only had 12 spoons a day, how would you use them?

Different tasks throughout the day use different amounts of spoons and the amount needed for each task will vary for everyone.

Let’s say you need:

1 spoon to get out of bed, get dressed, take pills or watch TV.

2 spoons to bathe, style hair, surf the internet, read or study.

3 spoons to make or eat a meal, make plans and socialise, do light housework, drive somewhere.

4 spoons to go to work/school, go shopping, go to the doctor or exercise.

Take away 1 spoon if you didn’t sleep well, forgot meds or missed a meal.

Take away 4 if you have a cold.

For some people resting will give you back a couple of spoons, but that doesn’t apply to everyone.

You can also go into the minus numbers and that’s using tomorrow’s supply, so you’ll have less spoons to start off with tomorrow. It even takes spoons for things like falling asleep so you have to spend them wisely.

You need pace yourself so as not to use up all your energy in one go and risk a symptoms crash later on, and you may need to prioritise tasks so that the really important stuff gets done first.

Pacing is a self-management technique used to help those with M.E, there are plenty of guides online to help you try it out, it’s my lifeline!

Once you get your head around spoon theory and pacing, it can massively even out the ups and downs, leaving you with more stability and saving you from flares.

Setting Boundaries.

I’m sure we’ve all had casual ableist comments from those around us. The classic ‘just need to put your mind to it’, ‘you’re just lazy’ and the stellar ‘have you just tried yoga?’. Unsolicited advice can often do more harm than good as we’re either too sick to try things, too poor or have tried everything under the sun already! 

Everyone will have an opinion on you being sick and a view of what is right for you, but at the end of the day you are the only expert on your body! Only you know what makes you feel better or worse.

Setting boundaries with family and friends about what they think is right for you as well as boundaries on casual ableism is vital to help both your mental health and your relationships with those people. A simple ‘only I know what works for me’, ‘that comment is degrading’, ‘no unsolicited advice please’ will suffice. If they continue, you can remove yourself from the conversation.

Keep it up and they will learn what is and isn’t okay to say to you. You don’t have to explain yourself to anyone, you’re going through a lot so minimising the trauma is a great thing to do

Process the Grief.

This brings me onto my next point; grieving the old self. It’s heavy stuff and often comes in waves rather than all at once. It’s important to give yourself permission to process the grief and work through it with a trusted person or therapist if you can (although this can be expensive). An alternative can be journaling or blogging. Journaling can be a great way to process the emotions you’re feeling, although this can be tiring. It doesn’t have to be written; voice notes venting to no-one but your phone work too. Don’t fight the grief or push it down; it does feel crap when you really want to do a thing you can no longer do.. and that’s okay.

Online Community.

You’re not alone in what you’re going through and feeling. If you use social media, try going through the hashtags #InvisibleDisability #ButyouDontLookSick #ChronicIllness #DisabledAndCute #BabeWithMobilityAid #LongCovid #LongCovidKids #PwME #WeThe15.

As well as these, a particular hashtag of interest is #NEISvoid. The No End In Sight void is for everyone, diagnosed or not, going through chronic illness. It’s a space to vent, ask questions and find community.

Standard social media aside, Scope also has a community online. You can discuss issues you might have, as well as just having a chat with other disabled people about anything and everything. Covid:Aid is another UK charity that has a support community.

Mobility Aids are Freedom.

Repeat after me: mobility aids are freedom! They are not just for elderly people, and they open the world up again. If you’re wobbly on your feet or your joints hurt, try a stick. I love mine!

Walkers and wheelchairs can be very helpful, and may even be found at low prices in charity shops. My powerchair is my most prized possession, but it took a lot of work to allow myself to feel like I could use it, plus some savvy shopping around to afford it.

If you feel like a mobility aid could help you, try one out!

People Will Drop Out of Your Life.

When the invites stop coming because you can never make it to things, when people don’t understand why you’re still sick, when friends you thought were close distance themselves and you realise the people you thought you could count on turn out to only like the able-bodied you… it’s okay. The people who care unconditionally about you will stay. You’ll meet others who will join them. Don’t worry when people start dropping out of your life. It’s horrible, but I promise that no amount of pandering to get people to stay will be healthy for you. You deserve love and unconditional care, from those close to you. Even when you feel so alone, I promise those people are out there.

Ask for Help.

I know it’s easier said than done, but next time someone offers you a hand and you could actually really use it, say yes! If you don’t need the help there and then but find you’re struggling at a later date, then reach out to those who have offered! The worst they can say is no. Asking for help from those around you, your community and even from things like benefits and social care can be scary, but the help exists and I promise it’s worth it.

Dax interjecting here: asking for help is something I struggle with to this day. It most often comes up at work, so afraid am I of inconveniencing someone by asking them for assistance that I instead inconvenience them by screwing it up. This lesson can be applied to disability. You are not a burden, even if your illness is described as one. In trying to be completely independent so as not to trouble others, you risk making your health even worse, which will result in needing even more help than before. Accept the help.

You can read Part 2: Dax’s advice here.

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