I get a lot of people who tell me they are jealous of my life. That they’d love to be able to just lie around all day. (here’s a hint: never say that!) I also have a lot of friends and family members who seem completely confused if I ever mention that I’m having a hard time with my illness. Because of them, I’ve thought about this question over and over. How can I possibly explain? Long term pain, both physical and emotional, changes you in a way that is impossible to express to those who haven’t experienced it.
When I first got sick, I was uncomfortable. I was in pain. I mean, I was sick all the time. I’d been in the middle of the trip of a lifetime, an 18 months mission to one of the poorest areas of Argentina and my health forced me to go home six months earlier than I’d planned. I was disappointed, of course, and frustrated and depressed. There were many tears. I think most people can understand the sadness that comes with this part of my story. But to be completely honest, at that point, things weren’t very hard. Not in comparison to what I’ve experienced since, anyway.
I think a lot of people assume that the first year or so is the worst because you’re adjusting to a new life style. But then they think you just adapt and move on, like you’re learning how to style a bad haircut or something. The truth is, it never gets easy. Every dream I ever had for my entire life was stolen from me in a way that forced me to sit back and watch while everyone else gets those same dreams fulfilled. It forces my heart break over and over without ever getting a chance to heal, making a pain deeper and more constant than anything I could have ever imagined.
I’ve thought of a million different analogies to try to explain it, but the truth is, it is not something that can be shared with words. At least not by me. I think it can only be understood through experience.
So, I guess my point is this. If you know someone with a chronic illness and, because of things you’ve gone through in your life, you immediately see how hard it is for them, then you get it. If you sit there and wonder, even for a moment, about why it would be hard, then you don’t. And that’s just fine! Great, in fact- it means your life isn’t a living nightmare- which makes me sincerely happy for you!
The best thing you can do in that situation is to know that you don’t know. If it seems like your friend is being overly dramatic about something and you can’t understand why, don’t sit there and think of all the ways she should just buck up and move one. Instead, remember that you are lucky enough not to understand, and trust her reaction to be a valid one. That kind of reaction can often give more support than if you’d gone through the exact experience yourself because along with support it shows trust and unconditional love.
In the end, not understanding can be a pretty amazing thing.
I’ve been enjoying reading your CFS blogs – the colourful pictures, the humour, the candidness, and practical language. Thanks.
I’m so glad you like it!
This just brought me to tears. I can completely relate to everything you wrote. Sometimes I think I am coping really well as I have got used to my blinkered life now and have come to terms with never meeting anyone, getting married, having kids. And I plod on with my little bit of self employed work because I’m no longer well enough to work for someone. But it is hard. Just this week, the fibro/cfs pain has been so bad I have thought I’d be better off dead, and it’s even harder if people around you don’t ‘get’ it. It’s nice to find someone else going through the same as me. 🙂
Lis- I’m so sorry you understand! But it is really nice to hear someone who knows what I’m going through. Hope your pain gets manageable!
An honest and powerful explanation of how it feels to watch other people’s lives progress as you stay sick. Thank you for putting my own experience into such a clear description, and the image graphic is powerful too! I’m using some of your graphics on fb to raise awareness and people have responded very positively to them. 🙂
Lis, I feel your pain… Just been through a very rough month myself. It does feel like there’s nothing worth living for sometimes, particularly when we feel left out / left behind all the time. Hoping you have some compassionate people in your life who you can share your grief with.
Hi, my name is Alexander, 4 years ago I got MONO and since then I just sleep in bed, I quit my university I do not feel the same energy level, before my energy level was 10 now it is 0,50 this is sad, and very boring and I tried with exercises but nothing help to much. Sometimes the tiredness is so big that I can not breathe well. I don’t know what God thinking in my case because doctors are completely powerless to help. My only friend is orange juice because it gives me the little energy to perform shopping and to do some basic things. My friends are gone and I don’t blame them. Maybe I should be hit by lightning so that my mitochondrias or cells regenerate same energy level as before if not I hope that something will happen, 4 years I don’t have a girlfriend and I believe I gone a little bit crazy because I don’t care about anything after this horror one little virus prepared for me.
Jessica, I am just after reading your article there and it got me unexpectedly emotional, as i understand exactly how you feel. For the longest time i was unwilling to leave the house because of my new state of being. However after a lot of inner conflict and soul searching and talking to myself, also not forgetting councelling, Drs telling me i’m depressed and referring me on etc, i eventually was told i have fibromyalgia, but that isn’t much help either as it seems to be a misunderstood condition and those suffering from it get little medical recognition as its an invisible condition. After all my years i now end up with this, any its supposed to be a workaholics condition, this makes sence as that was me, now i am what anyone would call just lazy.However, i am doing better, not sorted yet by any means but life has improved to a level that is more bearable for me or maybe i am just getting on with it as best i know how. Yes i get the unexpected pains, aches and swoolen joints (i have had a few handshakes that floored me due to my aching knuckles, now i try not to shake hands) My legs and arms muscles seem to be ‘clumping up’ and giving my lovely pegs new shapes also, but i am glad to be mobile on my feet not as good as previously but hey? I had so many plans for myself which got put on hold for now but i am doing stuff. then i rest a bit soon after and i get energy to go a little more, then i try and get more done and end up taking a long rest, such is my life. Planning goes into most tasks and outings, etc. My family now realise it takes me @ least 3 times longer to get ready to do anything, i forget stuff easily and get mixed up on dates and times, i can’t understand it but it happens, i can’t help still thinking i am lazy, even though deep down i know this is not so. Nutrition wise; well I try to avoid acid forming foods eg tomatoes,although cooked are ok, potatoes, peppers, dairy produce, all meats, especially wheat which sems to be a big factor in my healing process, i do eat it but i know after, (ibs, cramps, aches and pains, i have got to where i know what the culprit is as its not easy to stop eating what we have been raised on) Bernadette Bohan an irish woman who survived cancer does a lot of teaching etc and has books published one called” Eat yourself well,” its well worth a read)which seem to have the answer we need to healing the body, worth a try! I am sorry, i don’t usually comment on articles i read but felt compelled here. Some of my family dont understand my condition, and i dont make them the wiser, they know i am a different person to what i was and that i have changed and they know iam not as active as i used to be, and yes i am embarassed also as i can’t explain a condition i dont understand myself, there are so many symptoms and factors at play @ different times.
On a finishing positive note; it dosen’t matter what anyone thinks of me, i am being myself, relaxing more, enjoying life, taking time out to do what interests me (more slowly but i will get there, this dosen’t include any break dancing yet though)taking time to smell the flowers, pick blackberry’s, walks in the park, art, poetry and maybe write a book who knows;
Thank you, i am sorry you have this condition, but know you are not alone here, we have one life so lets enjoy it as best we can with what we have, Lots of good wishes to all who read this. M
So sorry to hear that you are so sick! But you are right- it doesn’t matter what anyone else thinks- you know the truth. I love the idea of taking time to smell the roses 🙂 I need to remind myself of that more!
My CFS began when I was 40 years old and that was 30 years ago. It’s shocking to realize that so many years have gone by and I’m still coping with CFS/fibro. As several others have mentioned, doctors are not much help. While my husband and teenagers were sympathetic from the beginning, and tried to understand my fatigue, it was difficult for everybody to adjust to having a wife/mother who no longer had energy to do all the normal stuff of life. Extended family members offered advice to “just push yourself” which was not possible, of course. Thankfully I did have a GP doc who had read about CFS and diagnosed me from the start of symptoms. His advice was to rest. Ah yes, rest. Those of us who live with CFS know all about resting!! And while resting my mind considers activities/chores that need my attention. I actually think “when I get up, I’m going to…..” but most of the time the body just can’t accomplish what the mind thinks. It doesn’t get any easier over time but it becomes ‘normal’ life of a sort. I cannot join others at the theatre, a Christmas concert, or other activities that last longer than 2 to 3 hours (including time to get there and back home). Brain fog sets in, thinking gets muddled, fatigue hits hard and I need to lie down. My marriage ended partly due to my inability to be a companion/partner. It’s incredibly difficult for a spouse to limit his own social life, which used to include you, and was filled with ‘couple’ outings with friends. On the plus side (finally something positive!!) I’ve found plenty of time to pray for others, to study the Bible, to send “I’m thinking of you” cards to acquaintances. And being part of a compassionate church helps too! My parting advice to fellow sufferers is this: Stay away from toxic, critical people & those whose perfect lives afford them no understanding of CFS. Do what you can, be kind to yourself, let go of things that aren’t important and enjoy the life you have! Let go of the ‘should’ and ‘everybody else does’ and ‘if only’ self talk. Find a kind, gentle friend (in person or online).