Each month a fellow blogger (A Chronic Voice) hosts a ‘Link-up party’. It is a monthly get-together for anyone with a chronic illness. An opportunity to share, to listen, and to learn from one another. It’s a great way to provide insight into life with chronic illness, from many different points of view. A Chronic Voice provides 5 writing prompts each month, and we use these prompts as inspiration.
July’s prompts are: Justifying, Starting, Planning, Analysing, Concluding.
If you would like to find out more about A Chronic Voice’s link-up party’s and read other contributions please click here.
“It’s amazing how chronic illness turns friends into strangers and strangers into friends.”
Maintaining friendships can be difficult for those of us with chronic illness. It may be hard for friends to understand the challenges we face, and the limitations our ill-health places on our lives.
When my health deteriorated, the number of friends I could rely on dwindled to just a precious few. Formerly dear friends vanished as I became increasingly unable to make or keep plans.
But supportive friendships are vital for us spoonies. Here are my experiences, along with some tips on how to be a good friend to someone living with chronic health challenges
When I first became ill I felt like a burden to my friends. I went from a happy-go-lucky healthy person – the life and soul of the party, to someone unable to socialise or even communicate at times.
It’s extremely hard to adapt to living with a chronic illness. I often feel like a stranger in my own body, and at times I feel like I don’t even know myself. So it’s not surprising that my friends found it hard to adapt too.
The truth is, I’m not an easy person to be friends with; I cancel plans at the last minute, I can no longer do a lot of fun stuff that I used to do, I may talk about my illness a lot, and I may need more reassurance than most.
And because of this my confidence and self worth took a big knock, and I found myself trying to justify their friendship. What could I offer to them now? Who would want to be friends with someone like me?
But for those of you blessed with good health, I have a little secret to tell you; spoonies make excellent friends. We are caring and compassionate, understanding, loyal, appreciative, empathetic and often have a wicked sense of humour – how else do you think we survive living with chronic ill-health?
It took me a long time to realise this, but I’m starting to know my worth rather than feeling like a burden. I am a good friend despite my ill-health. I deserve happiness, respect, love and friendship.
Friendships for people with severe forms of chronic illness are not always easy. Our friends may find it hard to understand that we are too ill for them to visit or talk to. The severity of our symptoms may scare them. Sometimes our friends just don’t know how to act around us when we are ill. So it’s partly our responsibility to educate our friends and family too.
Anyone living with chronic ill-health knows that the ongoing uncertainty about how we will feel each day makes planning almost impossible – chronic illness has a huge impact on our lives.
Not only is it hard to plan ahead, but we also often have to cancel plans at the last minute. Not everyone understands this. Some people don’t get the damage chronic pain and illness can do to not only our physical health, but our mental too.
Although it’s almost impossible to plan ahead when you have a chronic illness, this doesn’t stop me from trying. But it is important that I’m flexible with my goals and plans, and it’s even more important that my friends understand this too.
I am lucky enough to have two very good friends who completely understand. They will even text me the morning before a planned visit just to make sure I am still well enough. And they do not judge me if I have to cancel last minute. This means the world to me.
But over time, other friendships have fallen to the wayside as a result of my ill-health.
Please remember; we may seem unreliable because we often have to cancel plans – but it’s not us, it’s our health that is unreliable.
This section is aimed at chronic illness friends and allies.
If you have a friend who lives with chronic ill-health you may want to support your friend, but are unsure of how to do this. Please know that your phone call, text or visit could be the only one that person receives that week, so your friendship is more valuable than you will ever know.
Try not to over-analyse things too much, we are the same person we were before our diagnosis, we just have a few more challenges in life now.
So how can you best support a friend who has a chronic illness?
How to be a good friend
Being a good friend is pretty simple really;
Listen. Be flexible. Be informed. Be mindful. And most importantly, believe them.
Listen. We spend a lot of time on our own, and when we do see people we often need to talk about challenges in our life, or sometimes we just need a bit of reassurance. Be patient and take time to listen to us. Also listen when your chronic illness friend expresses how you can help them.
Be Flexible. Expect that they may cancel – have a back up plan so your friend knows they didn’t ruin your day and you’re still having fun. Offer to go to them – chronic illness is lonely. I’ve never felt more alone than when I was supposed to be with friends and instead I’m all alone in my bed in pain.
Be informed. Educate yourself about your friend’s illness. Nothing shows your respect for someone more than taking the time to understand their illness.
Be mindful. Living with chronic ill-health often brings with it some very unique challenges. For me, the hardest and most frustrating symptom is my hypersensitivity. I’m hypersensitive to everything! Light, noise, perfumes, touch, chemicals. Be mindful of the challenges your friend faces and adapt your actions accordingly. This could mean not wearing perfume, or keeping your visits short so you don’t tire your friend out.
Believe them. Respect your friends need for rest. Believe them when they share with you their struggles and symptoms. “I believe you” are extremely powerful words, especially as many people with chronic ill-health are often told they are faking, or exaggerating their illness. If they do have to cancel plans, do not take this personally. It literally has nothing to do with you and everything to do with their illness.
I would like to conclude this post by talking about chronic illness, friendship and guilt. It’s easy to feel guilty about losing friends due to our chronic ill-health. We often blame ourselves and feel like a burden. Unfortunately, guilt and chronic illness go hand-in-hand.
The sad truth is that when you develop a chronic illness you lose friends.
But instead of focusing on the heartbreak of losing loved-ones to your chronic illness, or playing the self-blame game, trust the process of letting go, and with that have deep compassion for yourself – them too. Know that those meant to be will stay. Remember that you are doing your best, you are dealing with incredibly difficult circumstances – so be kind to yourself. Speak to yourself as you would a friend – without judgement, without criticism, without drama.
Online friends – thank you!
Lastly, I would like to say; Although I have lost many ‘real life’ friends, I have gained many wonderful and supportive friends online.
Having a strong support system is the most important thing for my physical and mental well-being. I’m so thankful for social media because I can join groups and connect with people who have my illness, or similar illnesses all around the world. There’s nothing that feels better than having someone to talk to who understands what I’m going through.
Finding others who are suffering with similar symptoms is nourishing, and connecting with others who live with chronic illness can provide much comfort. And I am especially thankful for the friends I have made through my blog.
Thank you for your love and support 💙 Take care x
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