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The impact of ME

jenny_thisthingjenny_thisthing Posts: 1Member Listener
edited August 14 in Guest blogs

Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The aim is to help facilitate more open and honest conversation about life with chronic illness and how it affects our lives as well as our bodies.

M.E is a cruel, debilitating and isolating illness that I wouldn’t wish on anyone. However, if I could go back and ensure it never happened to me, I don’t think I would. I’ve learned so much about myself and I am now a more compassionate, understanding and appreciative person. That doesn’t mean it’s easy or that it doesn’t get to me, I think it’s so important that people know that.


Living with a chronic illness is tough and it can be gruelling at times. There are no breaks, no days off and you’re allowed to find that difficult. I struggle with it sometimes. I struggle with the idea that I’m not who I thought I would be, doing what I thought I would be doing. Sometimes my chronic illnesses make me feel like a barely-there version of myself and this has impacted my self-esteem. I got sick when I was a teenager, your formative years you might say, this means I’ve been sick my entire adult life.

Is it any wonder these conditions are entangled with how I view myself?

I think when people raise awareness of chronic illnesses they often jump straight to symptoms. I think it’s very important to do so, but there’s so much more to it. These symptoms impact every aspect of our lives. I think we need to create a more open and safe space where people can share these things. The symptoms are awful in themselves, but their impact is so far reaching and that’s something that is often overlooked.

I don’t know who I would be without my chronic health problems, but I’m trying really hard every day to come to terms with this new version of myself. You can’t tell someone they should accept themselves, but also tell them they need to separate themselves from the parts that are perhaps uncomfortable. You can’t tell someone to accept their scars, but that they need to separate themselves from the thing that gave them those scars in the first place. It’s all a part of our story and our story is worth telling. I don’t want to have to hide it, whether that be in the workplace or anywhere else.


I’ve lived with chronic pain and fatigue, as well as many other symptoms, for years now. It’s taught me a thing or two. I believe we need to have a shift in how we talk about chronic illnesses, mental illnesses and long-term injuries. I don’t believe it to be inherently negative to be realistic about your limitations or health issues. You’re simply trying to keep yourself safe.

Everyone should be able to be honest about their health in their workplace, school environment, home etc. They deserve it to be safe for them to do so. It isn’t about covering up the bad parts or pushing yourself beyond reason. It isn’t about wallowing in your situation either, even though I fully believe that’s allowed from time to time. It’s about working out how we can move forward safely – together. ­­

You can follow Jenny’s work on her Instagram page and her Facebook page.

Have you found it difficult to come to terms with a chronic illness? Do you believe opening up is helpful? Let us know in the comments below!

Replies

  • StickmanStickman Posts: 59Member Pioneering
    Hi Jenny

    Great post, very informative.
  • April2018momApril2018mom Posts: 2,451Member - under moderation Disability Gamechanger
    This is so informative! Lovely post. And yes I agree. 
  • HartleyHartley Posts: 114Member - under moderation Courageous
    @jenny_thisthing

    Since 2007...but officially diagnoses 2011   not bee a day off is a perfect description...

    Presently attending St Thomas' London...If theres no breakthrough there.....i'll just have to cross that bridge when i get to it..

    Ironically St Thomas' is actually over a bridge...lol  westminster bridge..


  • Chloe_ScopeChloe_Scope Posts: 5,837Administrator Scope community team
    Thank you for such a great post @jenny_thisthing

    I completely agree that the way we talk about conditions can make such a big difference.
    Chloe
    Online Community Officer
  • davesumdavesum Posts: 13Member Listener
    Hi Jenny.

    Nice post. As a fellow ME Warrior, it's lovely to read such an informative post.

    Dave
  • LindaButler1970LindaButler1970 Posts: 40Member, Community champion Courageous
    Hi Jenny a very informative story and it goes without saying that you are a fighter, keep with this as mental health and a positive way of looking forward is a good thing. 
  • deb74deb74 Posts: 325Member Pioneering
    Hi Jenny I also have ME and have just been diagnosed with fibromyalgia. which has now taken over my life! I have struggled with illnesses and disability all my life as I also have spina bifida, hydrocephalus, scoliosis and to top it all off I was diagnosed with a heart condition a few months ago. I was told by a guy I knew who has MS something once that I will never forget. Never be ashamed of your illness and disabilities because they are part of who you are! 
  • AilsAils Posts: 1,131Community champion Disability Gamechanger
    Hi @jenny_thisthing and thanks for sharing your experiences of M.E. with us.  This is a really insightful post which will inspire many people, no matter what health condition they may have.  Your spirit and determination is great and you are helping so many people by raising awareness of this condition.  All the best for the future.  :smile:
  • TobiasTobias Posts: 46Member - under moderation Courageous
    edited August 13

    Hi, my name is Jenny and I’m 24 years old. I’ve had Myalgic Encephalomyelitis (M.E) for 5 years but have been experiencing chronic pain and fatigue caused by multiple health problems from the age of 16. One of my hobbies is writing my blog: This thing they called recovery. The aim is to help facilitate more open and honest conversation about life with chronic illness and how it affects our lives as well as our bodies.

    M.E is a cruel, debilitating and isolating illness that I wouldn’t wish on anyone. However, if I could go back and ensure it never happened to me, I don’t think I would. I’ve learned so much about myself and I am now a more compassionate, understanding and appreciative person. That doesn’t mean it’s easy or that it doesn’t get to me, I think it’s so important that people know that.


    Living with a chronic illness is tough and it can be gruelling at times. There are no breaks, no days off and you’re allowed to find that difficult. I struggle with it sometimes. I struggle with the idea that I’m not who I thought I would be, doing what I thought I would be doing. Sometimes my chronic illnesses make me feel like a barely-there version of myself and this has impacted my self-esteem. I got sick when I was a teenager, your formative years you might say, this means I’ve been sick my entire adult life.

    Is it any wonder these conditions are entangled with how I view myself?

    I think when people raise awareness of chronic illnesses they often jump straight to symptoms. I think it’s very important to do so, but there’s so much more to it. These symptoms impact every aspect of our lives. I think we need to create a more open and safe space where people can share these things. The symptoms are awful in themselves, but their impact is so far reaching and that’s something that is often overlooked.

    I don’t know who I would be without my chronic health problems, but I’m trying really hard every day to come to terms with this new version of myself. You can’t tell someone they should accept themselves, but also tell them they need to separate themselves from the parts that are perhaps uncomfortable. You can’t tell someone to accept their scars, but that they need to separate themselves from the thing that gave them those scars in the first place. It’s all a part of our story and our story is worth telling. I don’t want to have to hide it, whether that be in the workplace or anywhere else.


    I’ve lived with chronic pain and fatigue, as well as many other symptoms, for years now. It’s taught me a thing or two. I believe we need to have a shift in how we talk about chronic illnesses, mental illnesses and long-term injuries. I don’t believe it to be inherently negative to be realistic about your limitations or health issues. You’re simply trying to keep yourself safe.

    Everyone should be able to be honest about their health in their workplace, school environment, home etc. They deserve it to be safe for them to do so. It isn’t about covering up the bad parts or pushing yourself beyond reason. It isn’t about wallowing in your situation either, even though I fully believe that’s allowed from time to time. It’s about working out how we can move forward safely – together. ­­

    You can follow Jenny’s work on her Instagram page and her Facebook page.

    Have you found it difficult to come to terms with a chronic illness? Do you believe opening up is helpful? Let us know in the comments below!

    I have the same condition with some co morbidity..I actually have alot of MS symptoms but they cant find any scaring ....its quite baffling!.,

    Walked 80ft today..very slowly to an app...and since i came home at 4.30pm ive been wiped out on the sofa..throat  swollen,glands inflamed and inflamed pretty much all over....Bad flare up.,,stinging eyes also...i always seem to get that!

    Hope you can find some ease with your pain....its certainly a struggle!
  • SusieDSusieD Posts: 15Member Connected
    I have Multiple Sclerosis, now in the advanced stage. Growing up in the Yorkshire Dales was harsh for most of any year, you just had to get on with it. Humour deals with a lot of hardship. Wading through snow to get to the school bus on a road you'd helped dig out the pevious days. And as you say, just get on with it, accept limitations the same as when contemplating a 10ft drift of snow you find a way around it. Or faced with a bull you give it respect it and courteously pass on by. Living with MS means finding ways of dulling the pain and problems with a combination of prescription drugs and gadgets. I bought a small folding scooter with wheels big and robust enough to cross a line of cobbles.

    Dealing with people is more difficult. You tell them you have a disability, tell them what it is, they express pity or understanding but the next time you come across them they've forgotten! I inform my neighbours that I have MS and not to expect much, only to have the one I spoke to last week asking me to move a car to beyond my return walking distance.
    Criminals and thieves fearing victim response target those least likely to fight back. I use a cross the body bag with securely stitched on strap, no attractive shiny bits, and wear a shiny referee's whistle on a lanyard around my neck so that is the only thing that catches the eye of a prospective thief. Seems to work. 

    Retaining employment was hard. In early years employers understood but asked not to have to make allowances. After family I took temp work - when my fatigue showed I was moved on to a new employer. But the job I did for a firm was remedial and being chronically ill we have learned to get on with achieving objectives so it didn't take me more than a week to remedy their problems anyway. 

    Socially it is unfavourable to live with an obvious illness in later years - everyone over 65 has their own health problems they want to talk about and they see me as a captive audience eager to hear about their ooh nasty things, talk of ulcerated bladders over coffee and cake does not appeal to me at all.

    Just keep going on, and do it with humour when you can. When I fall I curse - the eases onlooker's panic before they help me get up again. Buy hey, even Stephen Hawking used to roil his wheelchair over on its side from time to time and he was a physicist!  
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