Friends, why are you so crap?

Time and time again I hear from fellow chronic illness sufferers how over time they have lost their friends. I’m not talking acquaintances who they met through work or at the local pub. I mean people who they’ve spent years getting to know, who they told secrets to, laughed, shared jokes and be silly with. People who once loved and accepted them and all their quirks. These friends are not there now. They gave up trying to make arrangements for them to be cancelled, they stopped calling when the phone wasn’t answered, they grew impatient when texts weren’t returned the same day, they got angry when the other person said the pub was too busy for them, they got bored when the other person could only manage a quiet café to meet up. They stopped inviting the other person to social gatherings and since they no longer meet up regular, they eventually stop all contact.

And why? Because the other person got sick?

Now I do understand that it is hard for the well person to get what they need from a friendship (companionship, support, trust, dependency) when the other person is sick. But what I don’t understand is the complete abandonment! A sick person can no longer be reliable through no fault of their own, so why add to their problems?

There are things that can be done to give each person something of what they need. You just have to think a little out of the box.

To the well person

1)Try making a plan B that way you won’t feel so disappointed if your sick friend cancels your plans. This could be: Altering your plans so your friend feels more comfortable to still meet up. Try a zoom call instead or a phone call with loudspeaker on and a good gossip with a drink and cake. Try it, it’s like they are there with you and makes it a bit different than a usual call; Reaching out to another friend or family member and doing something with them instead. If you know someone is busy, ask them if you can join in/help out; Do something you love or maybe haven’t done in a while try walking, cinema, shopping, games, crafts, baking. Hey maybe bake something and take it round for your sick friend.

2) If you find you cannot meet up at all. You may naturally feel your friendship is drifting apart. That’s ok, it’s normal. Still try to keep in touch. Being unwell takes its toll mentally so a quick message to check in can be all that’s needed to perk up your friend and you’ll get a boost from doing it yourself too. Even if it has been a few weeks or months. Any contact says you are thinking about them and it should be well received.

3) If there is an occasion coming up try and do something that will help your friend feel included. Always invite them. Even if you are certain they won’t show up. Give them chance to decide themselves. They will always appreciate an invite and may actually be able to make one event. It will be something they can look forward to and create a good memory for you both.

4) If they cannot make an occasion try arranging something separate so they can join in the celebrations. Try creating a bedside party room with balloons, games, sweet treats or flowers (if they’re on a special diet). You don’t need to stay long but if the mood permits it could last a few hours especially if a few friends are there too. Remember it is their time so you will need to agree what they feel comfortable with, to not increase their symptoms. Sometimes just being with other people is all that’s needed to boost their spirits.

5) When you do meet up try being neutral in your responses when feelings are expressed. Saying things like ‘’that’s sounds tough for you’’ or ‘’that must be difficult to cope with’’, helps make them feel listened to.

6) If you do ask about their illness, try and read up on it beforehand. It will show you care and that you are trying to learn to help and understand them.

7) Break up heavy topics with conversations on lighter subjects where you can both have a laugh too.

8) If you visit their home, please remember they are unwell so the usual ‘guest’ status does not apply. Be ready to make your own drink and offer to help with anything they may need. Don’t be too forceful though, some people (like me) are stubborn and like to feel we can still do things for others. After an hour ask if they are happy for you to stay. It gives the person chance to say if they need a rest.

(Image from Heavenly Partners)

To the sick person

Friendships work both ways so you need to be mindful on how you behave with your friends too.

1)It is hard to be with someone who constantly complains about their health and issues. It also reinforces negativity to yourself and can pull your own mood down. So, if they ask you how you are, keep it short. Of course, you can have a big rant to air your feelings to them but don’t make it a habit. Mix it up and make sure you have fun to enjoy your time together. Your friend will have their stresses at work and relationships too so having a laugh gives you both a break from this.

2) When you get an invite to meet up. Don’t decline straight away (unless you have plans, of course). Give it some time or tell them it’s unlikely you will make it but you can only decide nearer the time. Be honest with your friend.

3) If you can’t meet up, have an alternative plan in mind. They will see you as putting in effort in seeing them. Saying no to everything will only put people off contacting you in the future.

4) Be kind. Always thank a person for an invite or for contacting you. They will know to keep you in mind next time too.

5) If a friend contacts you after a long time apart. Unless there is good reason to be angry with them or you feel they bring you down in some way, then accept them reaching out to you. I believe in ‘forgiveness’ especially when a person has good intentions. Life can get busy really quickly especially with families, so accept an apology and try to build a bridge. There’s always room for more friends.

6) People will make mistakes during conversations. They can’t truly know what you are going through and will unknowingly invalidate your feelings by saying things like ‘’I know I get tired too’’ or ‘’you’re getting older, you will struggle more’’. Sometimes you just have to bite you lip to avoid tension. Maybe give them some tips on what to say to you. You can judge the right time for this with a person but ultimately so long as you know they are well intentioned; you can often let it slide.

So, whatever you and your friend do and how often you make contact just make sure you still connect on some level. Your friend got sick they didn’t abandon you. Their every day is tough enough so don’t make losing a friend something else they have to go through too.

It’s the start of a new month. Let’s start as we mean to go on.

Lessons in love

For a few weeks there, I was getting very much stuck in my own head. Every time I spoke to my partner it was a grumble about how bad I felt or telling him my latest worry. Every time I opened my mouth out came another moan like “I’m tired”, “my legs ache”, “I’m agitated” or “when will this end?” and “what is our future?”. Conversations, or rather me speaking and him apparently listening, were heavy, and even I felt it was getting tedious. My partner gets in from a full shift, to then look after me, the house, the dog and try to fit in his own things he wants to do too. He’s tired, I’m tired. When did life get this serious? There’s no fun. So, I decided to make a change…

While my partner was at work, I walked the dog and when I got home, the dog sent him this message…

My partner loved it. He said it made his day and stopped him from worrying about us. He was much less moody when he got in from work.

Through all the hurt and angst my partner and I were forgetting how to have fun. It’s so easily done when illness clouds your every day. Now I try to keep things light and add some laughs to our day. You know the kind of thing, playful jokes and wind-ups, doing silly things like throwing a sweet while the other catches it in their mouth. When I’m laid upstairs, resting after a crash, I can hear him coming upstairs. I get out of bed and beat him to the loo and then laugh when he grumbles about it. This doesn’t always work in my favour. Our light switch is outside the bathroom door and when it’s dark and I’m in there, he switches the light off…not so funny. We’re like big kids really, you wouldn’t think we were in our 40s!

I have also made a conscious effort to stop saying out loud how much I ache or feel tired. It just gets too much. I didn’t realise how often I complained. To him, it became white noise and had become numb to it. Instead, I say nothing or when I need to I say ‘’I’m struggling can you please pass me…” or “I’m struggling can we sit in silence for a bit” and he’ll help me out. He often puts his ear phones in to watch bikey stuff on You Tube while I rest for 20 minutes. I also spend this time thinking about what jobs I want to do that day. As always there’s a few but I know I can’t do them all. Especially if I have just walked Kita and had to clean her muddy paws. So, I decide which is the lucky job that will get done. I usually choose something that helps my partner. It’s not fair for him to do all the house jobs so if I can, I do and if I can’t he knows it will get done another day.

Kita messages her dad most days now. She gets up to a lot so there’s always something to text about. Even if she’s asleep I’ll record her amusing snoring and often frantic twitching (i think she has chronic fatigue too, ha) and send it to him. It’s amazing what you can find to amuse oneself. It feels quite sad as I’m writing this, but when the days are long and you can’t do much else, I’d rather do something and if it gives us a giggle then that can’t be a bad thing.

All of this was what was missing in our relationship. I had become so wrapped up in my world of discomfort I forgot how to have fun. It didn’t take much to put the spark back. Of course there are still down days but even then, one of us will attempt to lighten the mood. It’s always worth an attempt, at least, it never does any harm.