Friday evening I went out for a meal with some friends. They’re friends I see only every few months. It’s a – let’s keep in contact kind of relationship. Usually after the meal, they want to go drinking and maybe do some dancing but I knew I couldn’t do this, my limit that evening was sitting down with them and enjoying an evening out that way. I’d arranged with my other half that he would collect me when I text him. I had to explain to my friends that my illness was causing me some real physical issues and it wasn’t possible for me to go standing around in pubs anymore.
I thought my friends would listen to what I had to say about what I was living with.
I thought my friends would understand I was still here, I was enjoying myself but there were some physical restrictions now being created.
What happened instead was out of five friends, some changed the subject and didn’t listen, a couple listened to what they could and one at the end of the night said she was worried, in a very caring voice. She thought I was giving up on life and that she had been there and understood, she said that I just had to push past it and get on with my life. That she had friends with “real” illnesses who were fighting it and living their lives. If by living their lives it means standing around in pubs and getting hammered I’m not that bothered. I can have a drink sat around a table eating and talking.
I’m living my life. I write and I get so much out of writing. Something else they didn’t understand. I enjoy time with my family and closer friends who understand my limitations and accept that some nights I need to be in bed, other nights I can sit and have a laugh with them.
I look fine. Especially when I put my makeup on and do my hair. You would never guess that if you stood me up for half an hour at a bar, I’d pass out because I can’t mind over matter my blood pressure.
I was really really hurt on Friday that my friends either weren’t interested or just thought I was giving up on life and I am still feeling the sting a little. So what if my life has to be adjusted a little. I’m still me in here. I just need to take life at a slower pace.
Here’s a great little video to explain it.
Sorry to hear this, Rebecca. I suppose the thing with friends you see only so often in a ‘don’t let’s lose touch’ type of situation is that they don’t know the person you are NOW. Some of them made a judgement about you and your condition because to have to take it properly into consideration didn’t suit their preconceived idea of how the evening was going to go. People are strange, aren’t they? The old ‘mind over matter’ brigade. Pah!
Thank you Linda. And you are right, they don’t know the person I am now, or what it is that makes me happy in life. People are definitely strange, I suppose it’s a matter of how much we are all going to adjust for each other.
Oh, Rebecca! Not surprised you feel hurt. Some people only understand visible illness – if you’d had a plaster cast on your leg, there’d have been no problem. I’d say stick to your real friends. Real friends love you in good times and bad, and they’re precious. Those who only want to know you when you’re a party animal, aren’t real friends at all, so don’t let it upset you. You’re doing a fabulous job, living with a difficult illness and you deserve admiration for that 🙂
Thank you. The good old visible illness analogy, it just rings so true every time. They don’t understand what they can’t see. Even if it was possible for me to be that party animal, not everyone would choose that as their ideal night out anyway would they?
Take no notice of them. People who don’t have a long term condition that you can’t control just don’t understand. Do what you need to do, do your best and that will be what people who really care want to see.
I’m not a big drinker now and get tired quickly but I’ve never had anyone call it not a proper illness. Take care of yourself, do the stuff you enjoy and ignore stupid people!
Thank you Lynn. It was the assumption that just because I couldn’t go round the town boozing, I couldn’t possibly be enjoying my life, that made me realise how little my “friends” knew of me anymore. The fact that they weren’t interested in the long term condition, is what hurts, but you’re right, there are people who really care and they are the important ones. Adjusting to life is just something we have to do isn’t it?
Further to my comments on Facebook, I’ve been out with friends for a meal before and several people have gone home straight after while some have moved on. The assumption is that the meal is the most important part of the evening. It’s a shame your friends couldn’t just enjoy your company for the time they had you!
Thank you Annalisa, for taking the time to comment again, even though you did comment on Facebook after I ranted at the time. Like you say, we all enjoy different things and going around town boozing isn’t everyones idea of a great time. Even if you’re not living with illness!
🙁 Sorry you had to encounter such selfish people.
Thank you. It’s hard when it’s friends, but now I know and will be able to deal with, or prepare for encounters with them better next time.
There are all kinds of friendships. Some people need you to behave in a certain way because that’s how it has always been. When life intervenes, as it has for you with a severe medical condition, you have to make difficult choices. Sometimes those choices involve letting go of former friendships because those people aren’t in a place where they can support you at the moment. Grieve for the loss and move on but leave the door open for your friends to return when they’re ready to accept the limits of your condition.
Thank you Pam. Wise words. You’re right about them needing things to be a certain way, because that’s the way it’s always been. Change is difficult and I don’t think they realise that we are all changing in different ways. No matter how small.
Now you know – those aren’t real friends. Casual friends. Ones you need to keep at a distance.
Now, just keep on living YOUR way!
You’re right Alex. They are casual friends. Thank you!
Rebecca – I”m so sorry those people responded to you that way. A real friend would have listened carefully to you, been glad for your company and delighted to spend time with you. And that response – to fight through – sounds as though she hadn’t even paid attention to what you’d said. You don’t have time in your life for people like that, and you’ve lots better ways to spend your energy.
Margot, how you explained what you thought should have happened, is what I hoped would have happened. It’s a group of friends who have expressed a plan to keep our friendship group together through old age and with blue rinses! It’s not going to work with attitudes like that though. A friend needed an ear to let them know I have some restrictions. Instead judgments came. It’s a good job I have friends who understand me.
Some people just can’t take it. They have preconceived notions about chronic conditios – just tough it out. It’s easier for them to think this way because they cannot deal with it. True friends stand with you, learn about your condition and how to help you deal day-by-day. . Believe me, I know. You find out who your friends are – people you can trust. and treasure. Thanks for sharing this with us:)
Thank you for taking the time to read and comment on this Nancy. It would be easy to walk away from a difficult subject.
It’s a shame things like this have to be so difficult. All it would have taken would be an open mind and a listening ear and all would have been resolved, because I didn’t actually need anything from them, just letting them know I have some restrictions. I suppose they felt my restrictions were then, their restrictions…
I am so sorry to hear what a disappointing and quite unfeeling response you got from people whom you’d considered friends. This is probably why I am reluctant to discuss my SAD depression with people. Call me cynical, but I think most people are too self-absorbed to really want to know or to care very deeply.
Thank you Marina, and I’m sorry to say that I think you are right. It’s awful to say that. But I’m finding out that you need to know your friends really well and know how genuine they are to know whether you can share something like this and like SAD, so that you are not hurt in the sharing. I don’t think it’s all self absorption, I think there is an element of not understanding the illness that is being discussed. Maybe we should go armed with a medical leaflet? I know that if I friend said one of these things to me, I would listen and I would listen as much as they needed me to. I would then understand if they were unable to do anything and if there was anything I could do to help, then I would. Some days I may need to kick myself up the arse to remind myself to do something that a friend needs from me but that’s from my own stuff, and yes, we do get self involved with things, but actively reminding ourselves that our friends are there isn’t a bad thing either. It’s friendship. I hope you do have someone you can confide in about your SAD in your real life Marina x
I’m not surprised. People think illness is weakness, but it’s the opposite. I have RA (rheumatoid arthritis) and AS (degenerative arthritis to my backbone) and daily migraines (which botox is helping). When it started, I felt sorry for myself. When I realized they were never going away, it became me. I realized everyone has problems, many worse than mine. Friends who didn’t understand why I can’t go out or stay out or get tired or am nauseous I don’t need.
OK, I’m done. This sort of stuff (meaning people’s reactions) just p**** me off.
It’s so sad that this doesn’t surprise you Jacqui. This should be the different, not the norm. I’m sorry that you are living with such difficult and painful illnesses. And I can understand where your stance comes from and that you have been through pretty much the same thing and more than one I imagine.
I did have a positive experience the following night – It was a hectic weekend!- We had a charity event planned in there was a group of 8 of us going. Meal and disco. Tickets already paid for. Bar didn’t close until 1am. Two cars drove and taxis booked for 12.30am home. I spoke to my other half. We were driving another couple in. I said I’d drive and not drink and then I could leave early when ready. And I did. And out of that group of friends, when I was ready to leave? I said my goodbyes, having drunk diet coke all evening and hugged all and left quite happily. Not a word or look said that suggested I was spoiling the evening or anything. It helped me through the previous evening.
I didn’t mean to sound so jaded. Yikes! I’m actually pretty positive about it, just accepting.
Love the follow up story. Much better experience. I’m going out with writer friends this evening–a workshop and then a bar to bond. I will handle it as suits me and I’m sure it’ll go fine!
It’s hard to be accepting. I hope you have a lovely evening tonight!
I can’t tell you how much your post resonated with me. I find that the hardest thing about my illnesses (neurosarcoidosis and POTS) is that to most people, they’re invisible. Although I’ve been more fortunate that you in that no one has ever said anything to me, I always imagine that people think it is in my head as they can’t see it. If only it was as simple as “manning” up! Do they not think that we would if we could? That we choose to have our lives limited by these illnesses?
So sorry to hear that your ‘friends’ were so insensitive. I’d be tempted to save your precious energy for nights out that are more enjoyable, with people who understand! xx
ps – didn’t realise until now that you were a fellow POTS sufferer. Interesting with a puppy and the constant crouching down and standing up, finding that more tiring than anything so far. Will be worth it though 🙂
I worry about grandkids (with my RA). How will I hold them, carry them with my lousy joints. Somehow it’ll work out.
It’s about adapting Jacqui. They will still love you just as much, even if you can’t carry them. I watched, only yesterday, the Prince Harry, South Pole Heroes, and on there one of the wounded Veterans who has lost his arm, has a daughter who was born after he lost his arm and it’s all she’s known. She loves him all the same. They adapt their relationship physically. It’s still as close physically, but adapted. It’s what both you and I (in the future) will have to do. Cuddles in armchairs as you read to them etc. x
Yes, you’re right. I’m siking myself up for it.
Hey Kate, yes fellow POTsie! 🙂 I’m good at taking it steady, the crouching and getting back up. Plus I’m not on the really bad end of the scale. You need to leave me standing a while before I pass out 😉 Fatigue is a massive killer though.
Luckliy evenings out tend to be few and far between with this group of friends, though I’m now in a position where I’m not sure what to do about future events. Not now I’ve seen what they think of me. I “man up” as much as I can to both EDS and POTS. But you just can’t do it all. In fact, I can “man up” to it to a certain degree. I can and have done that in my day job and kept it up for days and weeks and kept going and then completely crashed. But you definitely can’t man up to standing upright in a bar with alcohol inside you, because blood pressure will win every time in that situation. I’ve been there. I looked like a drunk and I certainly hadn’t had enough to be that!
I know what you mean about “manning up”. I spent years ignoring my health issues, carried on working 60+ hour weeks, competing my horse until my body said enough is enough and like you completely crashed. I was in hospital for a month needing a wheelchair to get to the loo. That was 2.5 years ago and am still a long long way from normal, but have come a long way too. Even now, I still ignore what my body is trying to tell me, doing more than I should, but I’m trying to learn to be a good patient 😉
With autonomic problems, you have no choice but to listen to your body. As you say, you can’t control fainting, and that’s the last thing you want to put your body through. See how you feel when the next event comes up – maybe don’t make it a priority to see them, but if you feel like it, go for a while, if not, then so be it. It sounds like you wouldn’t miss much.
Re puppies – I’m finding the crouching and standing really tough, as I’m constantly rescuing things out of his mouth. I’m on the max dose of my meds which is helping. And Luka is learning what “no” (or usually “NO”) means which helps too. 🙂 x
Reblogged this on Some of my favourite posts and commented:
Please read this fabulous post by Rebecca Bradley about the difficulties of living with ‘invisible illnesses’. She like me suffers from POTS, as well as each having another lifestyle limiting condition. So much of what she writes resonates with me. The hardest thing is that no one can see it. I hate being told “you look well”, which I probably do in comparison to my high dose steroid hamster face days admittedly, but I just want to scream back at them “but you have no idea how sh*t I feel on the inside”! It’s the funny stares when I use my blue badge, or when I get up out of the wheelchair in public. Yes I do have use of my legs, but that doesn’t mean that I don’t need the chair some days and for some things. I love the clip in the video of the girl crawling upstairs saying “I may be smiling and talking to you, but this is how it feels”. They see the couple of hours of me sitting and chatting but not the fact that I’ll be sofa bound, unable to do simple mental tasks, the following day due to the effort it has taken out of me.
I’m always worried that people think what they said to Rebecca, that I need to pull myself together and get on with it, that it’s all in my head. If only it was that simple!
Thank you Rebecca for finding the words to say things that I never seem able to x
Ouch! I would definitely still be feeling a sting if I had someone I considered even a distant friend say what they said to you. I’m glad you’re putting it behind you and not letting their words pull you down. *hugs*
Thanks Patricia. It was hard and I think I’m finally letting it go….
Hi Rebecca – it’s funny how people cannot relate to illness and look at the thing from your point of view .. humanity is a strange creature at times … sadly too often they don’t think.
All I can say is – well done for coping as you are .. and for doing what you can when you can .. I’m glad your other half understands … diseases such as yours are so challenging … my thoughts ..
Look after yourself .. and I hope you’ll have time for the A-Z .. I see you have many friends in the A-Z blogosphere .. and live in Notts .. it’s always nice to read English things .. and you know PamReader …
Enjoy the Spring and it’s beauty .. cheers Hilary
Hi Hilary,
Thank you for stopping by. I am doing the A to Z as I love doing it! And yes, I know PamReader. I hope to be able to attend book club in April! It will be a busy month 🙂
Invisible illnesses are so often misunderstood. Aside from what I said on Facebook, all I can really offer is a hug and empathy. I know they don’t fix anything, but hope you can feel the support. 🙂
I can feel your support, thank you Joanna. For commenting as I just splurted my thoughts all over Facebook as they happened and being here again when I’m calmer. Thank you.
🙂
A lot of people don’t want to hear about other people’s suffering because they just don’t know how to react. It makes them feel helpless so it’s better to talk about insignificant things and have another drink rather than have to look deep inside themselves and see their own inadequacies. They were just being human and selfish and wanting to have a good time. Sometimes people just need to be made aware of their inconsiderateness. Hopefully, they’ll get to see this post.
Carol, I think you’re right about them not knowing how to react and it being easier to just have another drink. Maybe one day I will be able to get close enough to make them aware of their inconsiderateness, but that may take some time. It will have to be a two way journey with my putting time in with patience to see if it sinks in. I can but try, but it depends on the level of hurt I can take in the mean time.
You have to listen to your heart. And anyway, your role is not to educate other people. It’s to be who you truly are. 🙂
Thank you Carol. X
Your true friends will understand, even if they don’t know much about your condition. I wish you all the best, and you will remain brave and enjoy whatever you do, especially your writing.
Thank you Chris. My close friends have been great and you’re right, that’s still without knowing much about my condition. And I will keep writing, it’s something I love 🙂
Good for you!
Having an invisible illness soon shows who your real friends are – and who your real family is. Since I was diagnosed with MS, I have had to re-order my life and made new friends. Even a visible sign like a wheelchair can scare people away or make them rude & ignorant. Just keep on writing and bringing inspiration to others.
It certainly does. At least we both have our writing and genuine friends as well 🙂