Friends and Chronic illness or a life lesson learnt

I’ve tried to write this post so many times now its becoming frustrating ( this is rewrite number 7!)

The problem is every time I start writing, I want to name and shame those that have treated me like shit since I became ill. Then the logical me steps back in and says “hang on, what benefit does it serve?”  because really there is nothing to be gained from it other than hours tied up in a libel court case.

It doesn’t matter how many excuses that I make for these people that I thought were my friends it will never stop the feelings of bitterness, it will never remove the feeling of complete and utter betrayal but why name them? They know who they are? Some of their actions were quite calculated and manipulative. Its only now with 7 years hindsight I can see that I had served my purpose and I was no longer useful to them. I am not claiming to be an angel, I know that I haven’t behaved well in the past. Its only with my new found self awareness and the passing of time that I see that now.

 Chronic illness and friendship are a highly emotive subject. Ive yet to come across anyone who is chronically sick who hasn’t been dumped by someone (or a group of people) they believed was a close friend.

  What prompted this post is that just recently I have been helping a friend get through this awful situation.Hers has been a much worse experience than mine, with cyber bullying coming into play. I have really found it hard to believe that her friends would accuse her of lying about a serious medical condition to gain attention. The campaign she has sustained has been quite vitriolic and has hurt her deeply, causing her to doubt herself and blame herself for the treatment she has received. Coping with a rare condition is bad enough but to then be bullied and called a liar about it, is just terrible. I’ve had doubters in my life but so far none have ever stated their beliefs on a public forum. Thank goodness for delete and block that’s all I can say.

So why does Chronic illness place such a strain on friendships? Why is it that we get dumped by people that we think or thought of as friends? Why do people become so judgemental, some medical conditions are “allowed” but others are not?

Initially ( and I expect a lot of other people in my kind of situation have done this) I thought it must be me. I thought that I must be a horrible, terrible person to know and that I was getting my just desserts. I thought that I must have treated people like this in some way and that I deserved to be socially isolated. It wasn’t a nice place to be, doubting every person you had ever been friendly with had ever really liked you. Being left alone for five days a week for up to 12 hours a day gives you a lot of time to think and pretty much no one you can seek assurances from that it isn’t the case.

It is a kind of torture of the soul to be treated so badly by another human being, when all you are asking for is to be able to talk over your fears as you are navigating this strange new world of chronic illness.

 At this time was I having to cope with having people I thought were friends drop me left, right and centre but I was also having to come to terms with losing my job and my health. All of these events affected me greatly and caused me a lot of emotional pain that took years to get over.

There were also the friends that didn’t drop me straight away and initially seemed genuinely concerned about me. They came to visit, bringing me magazines and small gifts to cheer me up and show that they cared. It was wonderful to have their company and talk about normal things. As the years went on and it was clear that the situation with my health wasn’t temporary, the dynamic changed in the friendship. They realised that the  power balance in the relationship was unequal. I wasn’t able to go and see them as I was now housebound and bed bound a lot of the time, they had to come and see me. So over time things like not showing up at the arranged time or  not showing up at all with no explanation or not replying to text messages that I had sent or always leaving it to me to initiate contact or making it longer between visits began to happen. This again hurt me deeply. I was unable to change the situation I was in and it felt like I was being punished for it.

This occurred with two individuals in different time periods but their friendship overlapped. I think that I was just incredibly unlucky to have this happen to me twice. I let both of these friendships (2 years apart) limp on for twelve months, continually being messed about, ignored and then picked up again when they had nothing better to do, before deciding it was time to let go.

I was so afraid of being alone that I would rather have been treated badly by another person than be by myself. I would never have put up with this in the past when I was well. The decision to end a friendship is never taken lightly by me, it took me a full 12 months with both of these people to end the friendship. Solitude is the consequence but I would rather be alone than be subjected to a toxic friendship ever again. The hurt of being ignored, picked up and dropped on a whim was just too much to have to deal with.

 Ending these friendships meant I certainly wouldn’t see people on a regular basis and it would be quite isolating. Having weighed it up, I decided that these people were causing me so much emotional harm that I really didn’t have much of a choice anymore. I need people around me to be supportive, caring and understand that I can no longer be the “loud one”. I need people to just appreciate me. I have made new friends but I will never let someone get really close ever again.

So why does chronic illness destroy friendships?

 I believe chronic illness alters the dynamic of the friendship beyond recognition. Things are  just not the same as the used to be. The person that is ill maybe housebound or just not have the energy to go gallivanting here, there and everywhere like they used to. There is a naive belief on the part of the healthy friend that everything can be cured if you “just find the right doctor”, ” get the right medicine”, “take some exercise”, “be positive”, “pray harder”, when that doesn’t happen and there is no end in sight it becomes boring to go around to someones house and have coffee every week, when they could be out doing something else, something they really want to do. It is  hard for the healthy friend to understand when you have an invisible illness that even if you don’t look sick, that you can actually be really ill, having crawled out of bed, showered and dressed just to spend some time with them, before crawling back into bed as soon as  they leave!

These feelings begin to build resentment in the healthy friend. They don’t understand that you spend your days alone and you enjoy their visits because you get to live a normal life for an hour or so. The healthy friend starts to see the visits as a bind and a waste of their precious time, after all the sick friend is just going to go on and on about hard bad things are for them and who wants to spend a few hours listening to that? The sick friend may counter that the healthy friend asked them how they were and they just answered truthfully, as that’s what friends do. I’ve learnt the hard way its easier just to gloss over how I really am because most people (apart from family) really aren’t that interested. I’ve got so used to just answering the question “How are you?” with “Fine” that my doctors ask me twice because they know I am anything but fine.

Also some people just aren’t cut out to deal with illness, at the first sign of trouble they head for the hills. Illness, physical frailty, vulnerability reminds them of their own mortality and lets face it who wants to be reminded of that constantly? I mean sick people, they are just so depressing!

Others were just your friend for convenience, other than the perks they could get out of you whilst being your friend when working together, you had nothing really in the way of friendship. Another painfully hard lesson learnt. The minute you leave work through ill health you become an inconvenience. To be in contact with you they have to do something, they have to visit you, text you, call you and they are just too busy to give you another thought. Yes you can call them and text them but I’m telling you now, eventually you will come to realise its all one way traffic and its you that’s doing all the calling and texting, and the best of it is they will then blame you for not keeping in contact!

Think it couldn’t possibly happen to you? Think your friendships are solid and will last forever? I hate to break it to you but you will lose friends if you become sick. Ive heard so many people stories, on  many different forums telling  of  their heartbreak, of how their friends have dumped them because they are sick. The stories that really upset me are the ones where not only have their friends deserted them but their family members do not believe that they are ill.

If you have family support then you are one of the lucky ones because you still have them when everyone else has walked away.

Having grown older and possibly wiser since becoming sick, (I mean I am practically a professional now having marked my 7th year in January 2014), I’ve come to understand that the majority of friendships don’t last a lifetime. You are very lucky if you are still best friends with the kid that you went to primary school with. People grow and change as they get older and so do friendships / relationships. Some friends grow with you and others don’t. Some people change for the better and well, others don’t. A hard life lesson learnt and it took me a very long time to understand that. Being chronically sick just throws a spanner in the works when it comes to making new friends when you’ve lost old ones.

Ive made quite a few new friends over the years, they’re mainly on line ones and we’ve found ourselves thrown together due to circumstance. Having online friends is great but it does not replace human contact which can be hard to come by when you are living a life like mine.

I have  made some cracking in the flesh friends! People that I worked with and didn’t really know very well have been amazing! I cherish those friends because they made the effort to seek me out rather than run in the other direction. I am also lucky in the fact during the summer months I can spend a few hours each weekend at my parents caravan and I have got to know some lovely people there. To them I have always been sick, they don’t know the healthy me so there is nothing to hide with them. Again I can be quite guarded when discussing my health with them but there is one person that I can be completely honest with as they are  going through a struggle of their own.

To be a friend to someone who is chronically sick / disabled is hard work. It takes effort and patience. Heaven knows how many times I’ve cancelled on people at the last minute due to being unwell. It means not going out and staying at my house, staying in is the new going out anyway or so I am told. It means turning up and not batting an eyelid if I answer the door in my pyjamas.

On my part Ive had to learn that not everyone “gets” my illness and to expect them to is unhelpful, crikey most of the medical professionals I come across don’t understand it, so why demand that people without medical degrees do?  I’ve had to learn to keep moans about my illness to myself or to family or two people outside my family. I’ve lost far too much from my life already to lose what little social contact I have left. As long as they understand that I am not well and can’t do certain things then what does it matter what my condition is called?

 Some people may say that’s an enormous compromise to make and that they can’t possibly be your friends if you have to do that. I disagree as the only person I share absolutely everything with is my husband. I  do agree its a compromise but I am sure that there are friends that you do not discuss politics or religion with as your views differ so wildly. Not discussing my health in great detail and limiting it to ” I’m fine or I’m having a bit of a rough time at the moment” is enough for me. We don’t ignore my health but I don’t make it the number one topic of conversation. It works for me and it ensures they aren’t overwhelmed by the magnitude of it all.

Staying in touch with friends is important for both parties the healthy one and the sick one. Text messages and social media are great for this, however neither of these is as good as a phone call or an actual visit. The effort put into staying in touch needs to come from both sides, there will be times when the healthy persons life is crazy due to their family commitments and their will be times in your own life when you are too sick to do anything. Give and take is paramount on both sides if you want your friendship to survive.

Friends, social interaction are an incredibly important part of my life. Its what keeps me sane and connected to the world outside chronic sickness.

Out of all my friendships I have only one person remaining from my pre -sick days. She has stuck by me through thick and thin and I want to thank her from the bottom of my heart.

Writing this post has stirred up a lot of emotions that I thought I had dealt with. Its probably been one of the hardest blog posts I have ever written and I have struggled to find the words to express how I felt at the time, such was the anger and the pain that flooded back to me as if it was only yesterday. I’m just sorry that so many of us spoonies have been through it and so many more will in the future such is human nature.

Me and my bestest friend of all!
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