Following on from a previous post about Romantic relationships, I thought I’d share my journey of making and keeping friends while dealing with severe and chronic illness.  I’m going to start out by saying that I’ve always been a bit of a loner.  Not by choice necessarily, but just by the fact that as a kid I was wise beyond my years due to a difficult childhood and never felt I had much in common with other kids emotionally, and as an adult I’ve had some crappy experiences with ‘friends’ which has at times made me wary of the human race in general.  My trust in people is therefore not that high, and I have to know someone a lonnnngg time before I call them friend.  I’m also a person who doesn’t do well in large groups – I’m much happier just having one or two close friends than dozens of acquaintances.  Bearing all that in mind I think my lack of friends during my illness hasn’t impacted me as negatively as it does other people, who are used to being constantly surrounded and defined by their mates.

When I became ill at 24 my closest friend was a girl who we will call L.  We’d known each other since secondary school and became ‘best’ friends when we were about 19.  She was ambitious, married into money, wore designer clothes and had to be seen in all the right places.  When I was first sick and stuck in bed she did come to visit – not armed with much needed food, or offers of help to wash my hair or change the bed sheets, but dolled up to the nines and asking if I was coming out to lunch.  If I wasn’t, she just said “oh well, maybe next week” and bogged off.  After I’d been ill for about 12 months, L and her husband asked myself and my boyfriend to go away with them for the weekend to stay in a rented cottage. I really wasn’t well enough, but my boyfriend was sick to death of having no social life due my illness, so I agreed for his sake.  I felt incredibly ill the whole time but tried really hard to put a brave face on it.  Nevertheless he got angry with me for not being able to join in, and for not being as vivacious and bubbly as he wanted me to be, and simply stopped speaking to me.  Instead of L being on my side, however, she sided with him.  She’d always fancied him, and this was her chance to be a shoulder to cry on (her marriage unsurprisingly didn’t last – she eventually ran off with her personal trainer).  I went to bed on the Saturday night and left the 3 of them down in the lounge.  What they didn’t realise is that I didn’t go to bed, but sat on the stairs listening to them talking about me, and saying how awful it all was for my boyfriend – there was not an ounce of empathy for my situation or the fact I was sick. And  I remember lying on the floor on the Sunday morning, feeling like death, and watching as L lay draped over my boyfriend’s legs on the couch while he massaged her feet.  Really.  Needless to say I dumped her as my ‘friend’ the second we got home.  It took me another 18 months to dump my boyfriend, but I got there in the end!

My 2nd closest friend at this time was a girl called N.  I first got the virus which led to my ME when I worked aboard a luxury cruise liner.  N worked on the same ship and we briefly shared a cabin.  That was in 1993 and she has been my best mate now for over 20 years.  She lives hundreds of miles from me, and I think that’s why our friendship hasn’t been killed by my illness.  As we live so far apart we’ve never “done stuff” together – our relationship has been based on talking on the phone once a week and giving each other emotional support.  She is my branch of the Samaritans!  There have been times in my illness where I could barely speak, or could only chat for 10 minutes, but N has never put me under pressure to do more and always made me feel like my friendship is valuable to her.  That I am valuable to her.  We are polar opposites as people: she is married for 20 years, I am single for 20 years.  She has 3 kids, I have never wanted kids.  She is a city chick, I am a country girl.  She is girlie, I am tomboy.  She is healthy, I am sick.  All I know is that I always feel better when we’ve spoken, and when anything happens in my life she is the 2nd person I tell (my parents being the first).  I trust her so much she is even executor of my will.  My self esteem being what it is I do still question why she’s my friend, but trust that she must get something out of it or she wouldn’t bother.  Whatever her reasons for being my friend, I am thankful.

My other close friend is K.  We met about 12 years ago at a local ME Conference, as K also has ME.  We’re quite similar as people, swear a bit too much and share a sarcastic sense of humour, if not hobbies (she’s into motocross and mining and knows more than a girl should about rocks – get a life woman! 😉 ).   It’s brilliant to have a friend who lives locally, as we meet regularly for lunch as well as trips to garden centres, galleries, country fares and the theatre when we’re both well enough.  Without K my actual real-life social life would be a big fat zero.  She’s clever, and funny, and creative, and practical, and resourceful and interesting and immensely knowledgeable ……… although I’d never tell her any this because I’d never hear the end of it 😉 .  Seriously K if you’re reading (which you won’t be as you think all this blogging stuff is a pile of crap) thank you for being my friend!  And I still think you should get a dog :-p .

I’ve been very active over the years on online ME forums, and now through my blogs.  I’ve met some fabulous people online that I now call friends, many of whom I don’t even have photos of.  When push comes to shove the only people who really know what you’re going through are other people with the same illnesses at the same severity that you have.  I also like online friendships in that they’re mostly via email, so I can reply when I feel up to it and they understand that I might not write for weeks (or even months) if I’m having a bad patch.  This type of support is invaluable and I seriously would have gone nuts without the internet and my online friends.  There is a downside though of putting yourself ‘out there’, in that lots of people may want to be your friend.  And while that’s lovely, I simply am too sick and exhausted to write to dozens of people every day, or to belong to every ME/POTS/EDS/MCAD/dog/photography/crafting group in the known universe.  I’ve also ‘met’ people online who think I’m a doctor and ask me never ending medical questions.  Or who are angry about their situation and want to vent at me….for pages and pages and pages.  Or who are miserable and want to constantly off-load onto me, when to be honest I’m depressed enough myself.  It’s a fine line and when you’re faced with a potential 80 billion people you have to be very choosy who you give your time and energy to.

So I have lost friends, kept friends, and gained new friends throughout my years of illness, and there are people I’ve met (both online and in real life) recently who may become good friends in the future, for which I am thankful.  And yet I still feel alone.  I don’t have any healthy friends nearby to help in a practical way, which is something I feel I’ve missed out on.  There are times when I’ve needed to go to a funeral or a hospital appointment but been too ill to drive, and I’ve had no-one healthy to call on for help (I’ll cover the subject of Family in a future blog post!).  This, of course, is where a healthy husband or partner would have come in, but sadly that hasn’t been on the cards for me.  I am still incredibly isolated, and am wary of imposing myself on neighbours (some of whom are lovely) as they are all healthy and busy and I don’t want them thinking they have to constantly put up with the sad, sick cow from next door out of pity.  At least I have my Bertie for company, though in typical man fashion he does bugger all round the house and his conversation isn’t up to much – unless you speak Schnauzer 😉 .

Photo of me & Bert

3 thoughts on “Friendship

  1. Sherry

    Well hello there. I am a new “reader” of your blog. Sick for thirteen years. Mast Cell and Histamine intolerance my latest investigation. Below, if you are having a moment of relatively healthy energy…yes, I do understand how limited this is for all things, it would be my humble pleasure for you to read it. It is a relatively short post I did recently regarding social life with a debilitating illness. Thanks for your frankness and your time and your precious energy in what you share with us via your blog. Cheers, Sherry

    “It is quite possible, remarkably so matter-of-fact, that I could regret this post but it feels like the right timing (one can never know for sure). Life is too short to be…inhibited unnecessarily (especially if it is enabling a fear). I’ve kept my private stuff really private so this isn’t easy. I guess my hope is that it can be beneficial, in some tiny way, to those who can relate to it. While it is my preference, driven by a desire for privacy and not wanting to be…evaluated…or defined by my illness, privacy seemed the appropriate choice for me (and one I will likely, and quickly, return to after this post). But now… in this moment… I feel as if I want to speak to those of us who have found ourselves in a heightened state of compromise; of massive re-shaping; of loss and the acceptance of such; of long nights and lost days; of aging (so to speak) before our time; of relentless planning, monitoring, adjusting, sinking, rising, losing, gaining…and constant redefinition of our relationships due to a chronic, debilitating illness. I have adjusted too many things as a result of becoming ill thirteen years ago; it is a work in progress though – always will be. Sometimes it is remarkably manageable; other times it is wretchedly difficult and horrendously overwhelming. I had a wonderful career. I had a strong energetic body. I had a clear fast-thinking, multi-tasking brain. I could walk down the street; hell, I could run! I could do so many things and go to so many places; whenever I wanted. I miss these things terribly and wish I honored them more when they were in my grasp. But, I have found balance, the majority of the time, by really getting to know myself and being true to me; by finding the light and the love and letting go of anger and fear; and by cultivating acceptance. But sadly, regrettably I suppose…it is the loss of social interaction that has, for me, been and continues to be, my greatest challenge for acceptance… and the catalyst for this post. When one is chronically ill, to the point of not being able to get out and about, nourish existing relationships and cultivate new ones…man, it is really tough; especially, for those of us who have personalities that are lifted by authentic, loving interactions; laughter; sharing; giving and receiving love and joy openly; refreshingly; honestly… sharing fears, successes, dreams, failures… we drift away slowly, a bit at a time and before it is… reasonable. Not fun. Not easy. Friends fade. Family grows tired. The heavy weight of our burden upon our family and friends bears down upon our bodies, our minds… and most damaging… our spirits – and shapes us into either self-pitying lifeless beings or flings us into the moment to live it to its fullest… despite its difficult lessons. It lands us in a place in time, any given moment, where it is real and the only thing we know for sure. I’ve been flung into the moment – and this is the greatest gift my illness has given me. Without my illness, I would still be a crazy go-getter and missing so damn much. I am grateful for this gift. Extremely grateful and wouldn’t want it any other way. It is this very gift that led me from fear as it pertains to singing and prompted me to “just do it already…post a song!” I am grateful for those of you who have supported me. But, we ill are often experiencing life to its fullest from behind the drawn curtain or at the sidelines or in the hospital and often, too often… alone. Friends and family – meaning all who have taken the moment to read this – whether we know each other or not… try not to judge your ill friends (or any friends for that matter)… and do not fear them… just be yourself, be real – and be… there… for… them. Life is too short. OK, rant over. New mantra: “I do not regret this post… I do not regret this post…” Oh, I must include that my husband, Robert, has been a remarkable human being who has anguished alongside me but has, through his love and undying patience, been my rock. I love him whole-heartedly and with tremendous gratitude. When I was in my late teens, learning life the hard way (as they say – whoever they are) I quietly prayed to be able to know the kind of love I have with Robert. My path led me to illness but it also led me to Robert. Thank you, thank you, thank you, Creator and Universe. Bless and love all – especially, in this moment, those who suffer.”


    1. bertieandme Post author

      Hi Sherry

      Thanks for the comment and for re-posting your piece. I find sharing my thoughts, even on difficult issues, cathartic if for no other reason than I know it will resonate with others and we can all feel not so alone in our struggles. I’m happy for you that you have found gifts from your illness and have such a supportive husband – blessed indeed! x


      1. Sherry

        Thanks for your hello and reply. I am grateful to receive your blog expressions; specially as I can sooooo relate. Yes, sharing thoughts on difficult issues is cathartic but damn hard to do when there is so much to express and one lays their soul bare. I am remarkably grateful for being “awakened to the moment” as a result of my world being turned up-side-down by illness but, to be frank, it is a practice that I need to be aware of as much as freaking possible or it will be overwhelmed by my darkest places within my illness. I do relate to the despair on a unwelcome intimate basis. And yes, I am so blessed to have a guy who has not only stuck around but adjusted as much as he can…having said that, it remains a struggle to accept the burden that comes with being so sick, every day as you well know, and still want to be in the company of another person who you feel constantly responsible for their unhappiness as it pertains to your chronic illness. Self-pity vs Self-growth is an ongoing struggle. I like to think I am bigger than my ego but it sure does get in the way, at my lowest moments, regarding how I see myself since becoming life-altering sick. Anyway, when you take your next trip (whether it be for something fun or for ongoing medical tests etc)…know that you are not alone. Imagine that we, your supporters and blog friends, are there by your side – holding you up, giving you space, just being there to say “you are not alone. we see you. we hear you. you can do it.”



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