There is a saying that goes, “It’s amazing how chronic illness turns friends into strangers and strangers into friends.”
When my health deteriorated, the number of friends I could rely on dwindled to just a precious few. Formerly dear friends disappeared as I became increasingly unable to make or keep plans.
But supportive friendships are vital for us spoonies.
I felt like a burden to my friends.
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 socialize 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 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 humor – how else do you think we survive living with chronic ill-health?
It took me a long time to realize this, but I’m starting to know my worth rather than feeling like a burden. I am a good friend despite the challenges my chronic illness may bring. 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 a chronic illness knows the ongoing uncertainty about how we will feel each day makes planning almost impossible – it has a huge impact on our lives. Not only is it hard to plan ahead, but we may 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 at the last minute. This means the world to me.
But over time, other friendships have fallen to the wayside as a result of my chronic illness.
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.
How to support a friend who has a chronic illness.
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-analyze things too much. We are the same people we were before our diagnoses; we just have a few more challenges in life now.
Supporting your chronically ill 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 plans – 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 a chronic illness 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 friend’s 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 illnesses 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.
To conclude, I would like to say a big thank you to my online friends. 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 all around the world who have my illness, or similar illnesses. There’s nothing that feels better than having someone to talk to who understands what I’m going through.
Finding others who are going through 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.
Follow this journey on A Journey Through the Fog.