The 30th of July was International Friendship Day and our social media feeds were full of reels and memes of besties, bike riding, holidaying, dining and living their best lives. On days like this, you (the luppie, the spoonie, the chronically ill) have a couple of options. You can either doom scroll – living vicariously – through the probably staged, five takes videos, or put the phone down and rewatch episodes of fake friends instead.
Many people who have a long-term illness struggle maintaining friendships and gaining the understanding and support they need from those they consider the most important in their lives. Our symptoms can mean that we essentially become the unreliable friend. The forgetful friend, who doesn’t answer their phone or respond to messages. The friend that cancels last minute on plans, that is always sleeping and doesn’t have the strength or energy to do the exciting fun things like summertime hikes or all-night partying. I was never a big drinker, but I enjoyed a cocktail every now and then; now I don’t drink at all. In recent years bottomless brunches have become a friend date favourite, and I’m always willing to participate and be there for the bants, but bottomless fruit juice with a couple of mint leaves doesn’t have the same benefits. Then you miss out on a few outings, because well, it takes a lot of work to match the fun level of those who are high on spirits, but also because you’ve been nauseous and can’t even dance due to the aches and pains.
Seeing the fun pictures on Instagram of the group outing that you missed can be heartbreaking. It’s hard to maintain an “I’m excited for you all” stance when your pals plan that holiday to Dubai that you were all supposed to go on. They plan knowing that you can’t come but simultaneously try to convince you that the 45˚ C heat won’t be that bad for your condition. Their understanding wears thin after a while. There is an expectation that you will take all of their advice, be positive and work through things in the timing that they would like you too. You still want to hear about your friends work drama and be there for them during their highs and lows. You want to see their smiles, hear their laughs, and feel their warm hugs. But realistically sometimes you just have to rest, switch off and be in bed. Reflecting on this reminds me of some of my favourite odes to friendship from TLC, Mariah Carey, Dione Warwick, Bill Withers and of course The Rembrandts.
My tips for maintaining friendships – firstly take charge. Provide friends with a list of activities that you might be able to manage and true friends won’t mind what you do, it will just be important to them that you get to spend quality time together.
Secondly, be as honest as you have the energy to be. By that I mean that sometimes being honest about how you are really feeling on any single day can invite a barrage of questions that you may not have the energy to answer. One of the things that I’ve learnt to do is speak about my symptoms and add a disclaimer such as “but I’m too drained to discuss it right now”.
Thirdly, be patient with people. Think of how you would be if the roles were reversed. How sympathetic you would’ve been? You can yearn for friends to just get it, but nobody is perfect and chronic illness is difficult to understand. If we would previously have been the person our friend would’ve spent four hours chatting to about the latest episode of KUWTK, our friends are probably missing that person too. They have to grieve the person that they’ve lost and they may need to find that missing part somewhere else.
Lastly, remember it’s OK to have boundaries but also that you need to communicate them. I’m terrible with group chats, but I warn people to add me at their own risk. Perhaps if you can’t go to lunch with a friend due to a hospital appointment, maybe suggest the friend comes with you and then you both can go for a quick bite after. That way they get to see what you have to go through; you get company and then some chill time. If I can’t make it out, try to invite people to mine for the catch up, but warn them that I may end up asleep on the sofa and that’s usually fine. If I think sometimes, we can feel hard done by in relation to our friendships but taking ownership of what they look like and how they develop can make all the difference.
As a lupus warrior you may find yourself disconnected and may lose friends while on your journey, but you will also find new ones. You will find help in places that you never expected, and support from total strangers. I’ve made so many new friends who have been invaluable, from Instagram, Facebook, coffee mornings and online support forums; they have been there whenever I’ve needed with advice about medication, symptoms or to vent. I thank God that I can honestly say over the last 5 years I have seen my friends less frequently but the bonds that I’ve built have been strong enough to keep the love alive.