Friends, family and fibromyalgia

By Keelin Nielsen Donohoe

Everyone always says that you find out who your real friends are when something bad happens. For me this was true and that came with some hurt and sadness but also with a lot of love and surprise.

The friend who doesn’t know how to handle it

This one hurts a lot. A lot of people experience friendships like this. When the illness gets too scary they just kind of disappear. I think some people just can’t handle it. I can never know what they are thinking of course. But my theory is that some people do not have the life experience or tools to deal emotionally with someone going through something so severe. That isn’t their fault but it doesn’t mean it doesn’t hurt a lot. I think perhaps they have no idea what to say or do, and therefore it’s easier to say nothing. In other cases, I think there are cracks in the friendship  or red flags that maybe have been ignored for a while and illness just makes who they are crystal clear.

The friend who has always been there for you

This friend is amazing. I hope everyone has a friend like this. They are the person who has gone through every single up and down with you for as long as they’ve known you. This friend listens while you cry your eyes out but also celebrates the tiniest win and achievement with you like you’ve won the lottery. If you are someone like me who often lies about how bad they are doing to most people (which I recognise is not a good thing) in order not to worry them or complain too much, this is one of the few people who knows the truth. This friend is also completely accepting of the fact that sometimes you are way too sick to be there for them in the moment they need you and they love you all the same. This friend is probably one of the reasons you’re still sane after all you’ve been through.

The friends who you aren’t as close with as you thought you were

These friends are the ones who aren’t your closest friends but who you might spend a lot of time in a wider group with. Some of these friends can disappear too when things get bad. Once again, I’m not able to read minds so I don’t know why this actually happens. Maybe in some cases its all a big misunderstanding. But I think sometimes people just aren’t the type of friends that you thought they were. They might be more like acquaintances, rather than the friends who will check in on you every now and again. This can hurt and be quite disappointing if you expected something different. But I think in the end it’s better to know.

The friend who you ARE closer to than you thought you were

This was such a surprise to me during my illness. When I got out of the initial phase of my illness (where I quite literally couldn’t remember a conversation two minutes later), I ended up catching up with an old friend on a call. We had known each other for about six months before I got so sick I was housebound, and the pandemic started (those two things pretty much happened at the same time- the universe really had my back). During the six months we went to school together we spent a lot of time together in a group, but I don’t think we ever hung out alone. But after that call she became one of my best friends. She was so understanding of the fact that being sick made me a completely unreliable friend who couldn’t even meet in person for fear of catching covid. We went a year and a half after the pandemic started without ever seeing each other in person. But she immediately accepted me fully for where I was in life and we became very close.

The family you didn’t know you had

I wish everyone could have the same experience as I had with the kind people around me. These people were my mum’s friends, her colleagues and our neighbours. These wonderful angels constantly offered their help, even staying the night to care for me if my Mum was away (some of my friends did this too and I love them for it) or ringing me to check that I was actually going to call them if I needed anything. One of these amazing people drove me to an appointment and sat with me in the waiting room when I was nervous. And even if we never needed to take them up on the help they offered, I heard from my Mum how they were asking how I was feeling and rooting for me to get better all the time. One of the kids I used to mind even told his mum to suggest I put the eye comfort shield on my screens so that I could read easier. I felt so taken care of and it was amazing to know that so many people who might not even have spent that much time with me, were wishing for me to get better. And sometimes just knowing someone is around to help pick you up if you fall (literally) was the difference between a bad day and a good day.

The family you’ve always had

I’m talking about biological family here. And before I go any further, I have to acknowledge the many stories I’ve heard from people who have to fight really hard to get their family to believe them about their illness. I can’t begin to imagine how difficult that is and I’m sending you all the love in the world. I was lucky enough to still be living at home when I got sick and my mum took care of me. I will never be able to write enough words to express how wonderful she has been. She was beyond selfless in everything she did to physically help and care for me, as well as getting me the treatment I needed. But the most important support she gave me was refusing to ever believe that I wouldn’t get better. She gave me countless pep talks and hugs when I was at my lowest and I am eternally grateful to her for everything she has done.

The friend with fibromyalgia (aka me)

I’m definitely not perfect, but I like to think that as a friend I’ve always been the kind of person who would drop what I was doing if my friends needed me. So when I got sick and very fatigued and sometimes completely unable to string a sentence together, I was devastated. I felt so guilty for not being able to call my friends whenever they needed to talk. They never made me feel bad for it, but it couldn’t have been easy for them. I felt like they were so there for me and I couldn’t return the favour. I also felt terrible about the fact that with a lot of friends, I disappeared for months. I was barely able to text or call one or two people with any kind of consistency let alone more. To be honest even when I got a bit stronger, I was wary of letting people I didn’t know as well in, and telling them about the illness. I definitely had a knock in confidence after losing someone who hadn’t been able to handle it in the past. Of course, I shouldn’t have felt guilty about being unreliable or unable to handle being in contact with lots of people. It wasn’t my fault. But I’m sure I’m not the only one who was sick, who felt that guilt, or still does. For the few friends I did let in, I think they are amazing. I knew it was hard for them to see someone they cared about so sick and in so much pain, but they stayed and cheered me up and cheered me on and I love them so much for that.

I got lucky. Illness brings out the best and the worst, and I got much more good than bad. I know not everyone has the right people around them right now while they are sick. But I hope you find those people who will accept you, illness and all, and be there for you no matter what. And if you are one of my amazing family or friends reading this right now, I LOVE YOU TO THE MOON AND BACK!