10 ways you can improve your mental well-being if you have a chronic illness
Published: 11 Sep 2020
Our Support Services Manager, Nadine, has written a blog on things that she has found helpful over her 30+ years journey with RA to improve her mental well-being.
The World Health Organisation states that wellbeing is “a state of complete physical, mental, and social wellbeing, and not merely the absence of disease or infirmity.” It is easy to focus on physical wellbeing when dealing with a chronic health condition such as Rheumatoid Arthritis (RA) and forget about how mental and social wellbeing impacts on the condition, which in turn impacts on our mental and social wellbeing. Much of what is happening in RA needs management from an experienced health care team, which can lead to feeling disempowered. Therefore, adding ways to support your own well-being also adds to your ability to cope with your condition and its symptoms such as pain and fatigue.
These are things that I have found help me over my 30+ years journey with RA, it's by no means meant to replace advice from your team of experts. Also, I may work for NRAS, but the information here is not necessarily the opinion of the whole organisation.
1) Know your disease
There is a saying, that “knowledge is power”, however, I would go a step further and say “access to knowledge is power”. No one is born knowing everything about everything, and most people who are diagnosed with RA have not even heard of it, or how it differs from other forms of arthritis prior to diagnosis. It is tempting to go searching the internet for more information. The great thing about the internet is there is so much information out there, the really bad thing about the internet is there is so much information out there it's hard to know what is right. So always ask yourself, are they selling something, is it evidence based or just one person's experience? Currently there is no cure, so keep a healthy amount of skepticism when people claim to have found a cure.
2) Ask questions and tell your team what is going on with you
This follows on from the previous point. Your rheumatology team are experts in their field but can sometimes forget that people with the condition are not always able to process the information they give. Write down any questions you have before you go to your appointments and ask them if you can take notes. This is particularly important when changing medications. Also, always tell them of the things you have noticed, it may be nothing, but it may be a side effect of your medications. No matter how good they are, they are not psychic and can't just tell what is happening. There are Apps to help you and your team such as know your DAS and, My Arthritis and Rheumabuddy that can help with this.
3) Talk about your mental health and feelings in general
It is generally accepted that there are links between RA and depression; initially, it was thought of as a consequence of pain fatigue and the social changes that go with disability. Over the last 10 years there is growing evidence that there are links between the body chemicals released in the auto-inflammatory process and the function of brain chemicals, or neurotransmitters. So, its normal to experience depression with RA. I found this a great relief as I had thought I was going mad as well as having RA, and as a former psychiatric nurse, this distressed me greatly. Please tell your rheumatology team about feeling down or depressed, they will not think less of you for sharing it. Talk to your friends and family as well, let them know if you are not coping.
4) Practice mindfulness
Mindfulness is a buzzword at the moment, with people talking about how they are gurus who studied for years to be a mindfulness practitioner, or how “being in the moment changed their life". Mindfulness is both far more simple and broader than you might think. Mindfulness is simply about leaving behind the guilt and recrimination of the past, that we can't change, as well as releasing the fears and hopes of the future, that we can't know for certain, and focus on the right now, which is the only sphere that we have direct control over.
Mindfulness can be as simple as sitting down and resting for 5 minutes focusing on our breathing when we are tired, or really savouring every mouthful of your favorite meal to distract yourself from pain. There is a plethora of different meditations and courses in Mindfulness as well but think of it as a smorgasbord where you take what you like and leave what you don’t need.
I also find a useful part of this is practicing gratitude. It is very easy when living with a chronic illness to get into a spiral of focusing on what you have lost and how bad you are feeling, so taking back a bit of control by expressing gratitude for what you have can stop, or at least slow, that spiral. Rather than get angry that you can't go for a run or brisk walk, find gratitude in the gifts that moving slower and more carefully will afford you, like watching a bumblebee in flowers, or finding that face in the gnarled bark of a tree. I am mostly grateful for the people I have met and the friendships I have formed because of RA.
5) Talk to your friends and family and put in support systems when you are at your best
Because when you are in pain or fatigued it is easy to lose subtlety and get cross at people for not understanding.
Sometimes you will look forward to an event, plan for it, or buy a new outfit, but when the time arrives you just can’t do it. Pain and fatigue are huge barriers to planning, as their arrival can be as sudden as their leaving. It can help to have a word, phrase or object that lets people know how you are on that day.
One of the children who came to the camps I ran had a traffic light system in her classroom. She had 3 pieces of coloured cardboard, red, orange, green. On her good days she would place the green one on her desk so that her teacher knew she was up for anything, orange was a “not good but want to be involved day”, and red was a “it isn't going to happen today” day.
Key up certain people to do things to help that don’t scream, look at this disabled person. A dear friend, who was a nurse, would always walk two steps below me on the other side from a handrail, so that I could have his shoulder to support me as we walked down a set of stairs. No one really noticed until his daughter started doing it when he wasn’t around. I tell my friends I am having a wobbly day when my knees or ankles are playing up, so they know not to suggest a long walk or to go dancing, or to even ask any more questions.
Also know that, on the whole people around us want to help, it’s why they are always full of well-meaning advice such as my great Aunt Martha’s next door neighbor drank 4 glasses of celery juice whilst standing in a footbath of ginger and yoghurt and cured her arthritis. I find a reply of, “thank you for sharing” leads to less disagreement than “don’t be daft, you don’t know what you’re talking about”. It makes a great game for any time you try number 10, who has been told the strangest “cure” and people really do just want to help (number 4- gratitude)
6) Do something that brings you joy every day
Write a long list of all the things that bring you joy or just makes you smile. This can be from the smallest thing to the big ones, such as eating a chocolate frog to going on holiday. Some may be things that are difficult to do now, but there can be ways around it.
A friend with RA had booked a holiday on the beach in the sunshine but had to cancel after her hip surgery was problematic and she ended up in hospital for some months. So, for her welcome home, her friends and family threw a tropical themed party, that way we all got to holiday with her. Much of the joy of travel is in the planning, looking at all the beautiful places to go, what to do when you get there, how to get there, what to pack. So, when you actually get there, you have planned your contingency and packed you most comfortable shoes. I am a coffee snob and on bad days I use a cup of “proper” coffee as a reward for actually getting out of bed.
7) Move your body
Everyone talks about the importance of exercise, but pain and fatigue can mean that word brings on a panic attack, then we feel guilty because we know we need to do some exercise. Don’t think of it as exercise, think of it as positive movement, then it becomes a part of your life rather than something you have to “do”.
A physio once said to me, “exercise should be taken regularly not seriously” and I take this literally and as have as much fun as I can whilst doing it. They say that if you find a job you love you never work a day in your life, the same goes for exercise, find something you enjoy, and it doesn’t feel like a chore. My favorite group exercise is aqua aerobics, which I affectionately refer to as “leaping around like a demented walrus” because it is impossible to take yourself seriously while doing exercise in water.
A personal trainer I had used to reward me for a good session by allowing me to use him as a punching bag at the end, to be fair I was about as effective as a fly in boxing gloves. But it was very satisfying. I also love to dance, be it with lots of preparation for a music festival or sitting on a chair rocking out, trying not to give myself whiplash or literally become a head banger (against the kitchen table), or on bad days, conducting like a demon.
8) Laugh, laugh, laugh.
Carrying on from the previous two points, you may have noticed a bit of a theme. Have fun! RA is no fun at all, but that doesn't mean that I can’t have fun as a person with RA.
Everyone knows that exercise produces endorphins, the body's natural pain killer, but so does laughter. That’s why I think laughing and exercise go hand in hand, because you get a double dose of happy hormones. Add chocolate as a reward and it’s a triple dose.
My favourite thing to laugh at is myself, because, if you can't laugh at yourself, well you have no right to laugh at anyone else. And that is my second favourite thing to do, laugh at other people, mostly my husband, but that’s part of the reason he is my husband. I do know that it can be hard to laugh when you are tired and in pain, so try this, where ever you are, say ha ha he he he, ha ha he he he five times and I bet you can't get to the fifth time without naturally laughing, because, let's face it, it sounds ridiculous.
My friends had a game we played called “Move like Jagger” when the song came out. We would send a text to someone else playing the game telling them to move like Jagger, and wherever they were they had to do their very best Mick Jagger impersonation and send a photo. The confused faces of other people on the bus whilst I did my best Mick Jagger type chicken pecking walk, made it all worthwhile.
9) Express yourself creatively
Sing, paint, draw, write, cook, bake, play (sport or musical instruments) dance, act, take photos. To my mind this incorporates a little bit of 4 and 6.
I am very lucky, my father was an art teacher, and my mum is very crafty, so we have always had access to art and craft materials. I love photography, so I use my camera as a reason to walk slower, so I don’t miss the little things like the way light dances on the water, it also brings me great joy to share the beauty in the small thing through social media. During lockdown I rekindled my love of charcoal pencil drawing. I also tried my hand (unsuccessfully I might say) at watercolors.
You don’t have to be an expert, just give it a go. Apparently singing also releases endorphins like exercise does, however, I keep it to the car on my own as I don’t want to risk the neighbours calling the police on me thinking I am torturing cats.
10) Support groups and organisational membership
Some of the greatest people I have met have been other people with RA that I have met in support groups, at camps and picnics, through arthritis charities and whilst running self-management courses. These groups can meet online or face to face, although there is not much of that at the moment. They can support and inspire you when you are having a bad time of it, and you can support and inspire them when you are doing well. The kids who came to the camps I coordinated when they were children and the people from the working aged support group I helped facilitate are among some of the amazing and inspirational people I am now blessed to call friends. Being a member of an RA organisation means you can add your voice to others so that you are better heard on a social or political platform that may benefit you and others. When you feel lost and powerless, this is a huge rush.
Not one of these suggestions works all the time, and not every tip will work for everyone. These are just things that have worked for me at different times in different combinations. So, if these don’t resonate with you, see number 9, and get creative and create your own top 10 tips. Then see number 10 and get a group of likeminded people to share them with.
By Nadine Garland, NRAS Support Services Manager