The World Needs to See This: Living with Severe ME

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Twenty-year-old, Linda, from Sweden shares her story about getting ME at the age of 4, living with a mild version of it, which has since turned severe. Originally posted on #MillionsMissing Sweden’s Facebook page
Isolated from the outside world, stuck in-between four walls, trapped in the prison of my own body…
I was only 17 when severe ME turned my world upside down and robbed me of everything I know. My name is Linda and I’m 20 years old. I’ve spent the last 3 years of my life lying in a dark and silent room. I can’t sit up. I’ve been tube fed for the last 2 years because of difficulties getting enough fluids and nutrition. Every movement, light and sound causes severe worsening of symptoms.
I miss eating real food, I miss seeing the sky, I miss all the little things in life that you easily forget to cherish, and I miss the life that ME stole from me.
Since I got ME at 4 years old I’ve been met by misconceptions and ignorance about my disease. I had mild ME to begin with, and if I had gotten adequate health care and treatments when I needed it, I never would have been bed bound. Instead I was misdiagnosed and had to endure repeated mistreatment by doctors with lacking knowledge about ME.
Because of being forcibly activated by the medical team, the wrong advice about how to handle the disease, and because I haven’t taken the disease seriously myself, I have now gone from the mildest form of ME to the severest form. It took over 10 years before I got the correct diagnosis, and during that time my condition seriously worsened. Just like many other ME patients I have suffered from incredibly inadequate knowledge about ME in society, and I don’t want to see more patients face the same fate.
There’s a need of awareness and knowledge about ME. The world needs to see what this disease is, before more people suffer like I, and so many others, already have.”
(Translated from Swedish.)

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8 thoughts on “The World Needs to See This: Living with Severe ME”

  1. Maschelle Mashburn

    I am at the point in my relationship with my doctor where I don’t tell them about medical things that have been happening to me because their forced treatments are too much, and have had a huge part in my mostly bedridden status that I now exist in. I am only able to find the energy to go to the required 3-month re-evaluation to continue receiving medical treatment. Thanks for that, Congress! You guys are killing me.
    Every time I go in I must walk because nobofy that I have in my life will push a wheelchair and in the past refused to help me load and off load my power chair. Why? Because our goverbment said it is all in my head… so I’m beung treated as a mentally ill patient that they refuse to be “Enablers” for.
    The cruelty is barbaric and I don’t have much left that I can still do.
    My doctor refuses to read about any new info or updated diagnostic criteria, and I have pleaded with them!
    So, I must continue to not go in when I have an injury, and try to treat illness and infections at home. For fear that of the harm my doctors do.

  2. It is so sad to read this story because I have a son with severe ME
    He lies in a darkened room with an eye pad, cannot talk, cannot stand noise or being touched
    He has been totally bedridden for over two and a half years but has had ME for nearly twenty years
    When is the medical community going to take these people seriously
    In the meantime patients are dying, commiting suicide or living in a body that literally traps them

  3. You would think after 20+ years I would get used to the judgement and disbelief that has came with having ME/CFS, SLE Lupus, POTS, Fibromyalgia and related co-morbid conditions. But I’m not..
    Last week my husband of 24yrs noticed I’ve been using a cane to get up & move around. He asked me “Have you looked at yourself in the mirror lately? You can hardly sit up or stand without passing out, you spend most of your time in bed, and now your actually using a cane. You are 45 not 70. Look what you’ve done to yourself, what you’ve let yourself become.“
    He is right. My physical limitations are getting worse. I’ve had knee surgery, lumbar spine surgery and now need a total knee replacement, all within the past 12 months. However, until he said something I had actually looked in the mirror & felt proud of myself for pushing through the intense fatigue & pain and finding a way to get up out of my bed and move around. Even if it was by using a cane.
    Unfortunately my husband isn’t the only one who feels this way. When I hear judgement from a Physician it is upsetting
    I was diagnosed with Congestive Heart Failure and referred to a Heart Failure Clinic. Just 2 minutes into my appointment the Specialist said that when he saw my age, various diagnosis and medication list on my chart he knew what was wrong with me. What was causing all my problems.
    I naively looked at him with hope and then he said “all you need to do is quit taking your pain & anxiety meds, start excersizing daily, learn yoga and meditation to treat your pain and anxiety and you will be back to good health quicker than you would think. Your Heart Failure will improve and you will be able to work again like you should be doing at your age. I’ve never taken even a Tylenol. Meditation does wonders. It’s all mind over matter. The pain & anxiety meds are the cause of all your problems.”
    I started to explain that I’ve tapered down when I can but currently the pain is so very bad. Before I could finish responding, he noticed I was crying, he stopped me and said “I’m sorry if the truth hurts but you’ve done this to yourself with the help of your Physicians.”
    “ If you don’t follow my advice and wean off all pain and anxiety meds then I will not treat you. Your Heart Failure would then continue to get worse which doesn’t really matter because I’m confident you will be dead from opiate use within two years anyway. Haven’t you heard of the opiate epidemic?”
    “Why waste my limited time & resources treating you. If you change your mind then call and make an appointment. Otherwise, good luck.”
    He left the room, I started sobbing.
    Whether it’s my husband who tries but just doesn’t understand what it’s like to have a disabling condition, well meaning friend or family who suggest to just push through and try harder, or a quick to judgement Specialist who blames ALL my problems on the current issue of the times, the opiate epidemic, and truly feels that meditation, excersize and a medication free life will cure me of my conditions, I feel frustrated, judged and try to hang on to hope while trying to manage my conditions the best way I know how.
    If you’ve read all this, thank you for listening, sorry it was so long, and PLEASE, if you come across someone living with an “invisible disability” treat them with the same understanding and compassion you would if they had cancer as I’m confident they receive enough judgement. Everyone needs understanding and compassion in this life.

    1. Lana, I am really sorry to hear you relay this story. I appreciate you taking the time to write it. You sound like a very gracious, patient and strong person in the face of all of this! Don’t let anyone steal your joy of how hard you are working to fight for yourself, take care of yourself, and live with dignity. Hold on to that inner strength and self-respect. Just dealing with chronic illnesses is so much work regardless of the pain and stigma! In our community, we are building a movement that lifts the consciousness of everyone towards respecting and addressing chronic illnesses that are not yet fully understood. Maybe, one day this comment will be in a history book!
      Have you heard of our Living with ME Support Group? I recommend you join to find camaraderie with people going through the exact same struggles as the one you described: https://meaction.net/2018/09/06/nih-update-collins-will-address-our-demands/
      Maybe someone can suggest a better heart doctor who practices in your area!

      1. Susan Timewell-Jeffs

        To all of you who have bravely told your stories today I want to say that you all need to find better doctors. I too have ME/Fibro and Chronic Daily Migraine. After working through 28 yrs with this disease, dragging myself to and from work I finally quit and went off on disability. When I started into Menopause the Fatigue and migraines became worse and I had to detox myself off Triptans from all the yrs of taking 3 a day just to manage to stay at work. I have a good pain specialist who is very empathetic and encouraged me to stay on disability. She also encouraged me to try Medical Marijuana for pain and my Migraines. I haven’t found the right blend yet and I’ll only use the Oil. Novartis’ new migraine shot Imogene will be available in Canada Nov/Dec this year and I am breathlessly waiting for it’s arrival. I’ve been in bed for almost 4 yrs because of the ME connected migraines and I’ve become week. Meanwhile ME/Fibro research is moving ahead quickly now. Become members of all the Information Newsletters. I feel someone is going to find something to help us all soon. Keep your spirits up. It feels hopeless but medical research is at a point where it is moving very fast now. It will be our turn soon. Sue

  4. You would think after 20+ years I would get used to the judgement and disbelief that has came with having ME/CFS, SLE Lupus, POTS, Fibromyalgia and related co-morbid conditions. But I’m not..
    Last week my husband of 24yrs noticed I’ve been using a cane to get up & move around. He asked me “Have you looked at yourself in the mirror lately? You can hardly sit up or stand without passing out, you spend most of your time in bed, and now your actually using a cane. You are 45 not 70. Look what you’ve done to yourself, what you’ve let yourself become.“
    He is right. My physical limitations are getting worse. I’ve had knee surgery, lumbar spine surgery and now need a total knee replacement, all within the past 12 months. However, until he said something I had actually looked in the mirror & felt proud of myself for pushing through the intense fatigue & pain and finding a way to get up out of my bed and move around. Even if it was by using a cane.
    Unfortunately my husband isn’t the only one who feels this way. When I hear judgement from a Physician it is upsetting
    I was diagnosed with Congestive Heart Failure and referred to a Heart Failure Clinic. Just 2 minutes into my appointment the Specialist said that when he saw my age, various diagnosis and medication list on my chart he knew what was wrong with me. What was causing all my problems.
    I naively looked at him with hope and then he said “all you need to do is quit taking your pain & anxiety meds, start excersizing daily, learn yoga and meditation to treat your pain and anxiety and you will be back to good health quicker than you would think. Your Heart Failure will improve and you will be able to work again like you should be doing at your age. I’ve never taken even a Tylenol. Meditation does wonders. It’s all mind over matter. The pain & anxiety meds are the cause of all your problems.”
    I started to explain that I’ve tapered down when I can but currently the pain is so very bad. Before I could finish responding, he noticed I was crying, he stopped me and said “I’m sorry if the truth hurts but you’ve done this to yourself with the help of your Physicians.”
    “ If you don’t follow my advice and wean off all pain and anxiety meds then I will not treat you. Your Heart Failure would then continue to get worse which doesn’t really matter because I’m confident you will be dead from opiate use within two years anyway. Haven’t you heard of the opiate epidemic?”
    “Why waste my limited time & resources treating you. If you change your mind then call and make an appointment. Otherwise, good luck.”
    He left the room, I started sobbing.
    Whether it’s my husband who tries but just doesn’t understand what it’s like to have a disabling condition, well meaning friend or family who suggest to just push through and try harder, or a quick to judgement Specialist who blames ALL my problems on the current issue of the times, the opiate epidemic, and truly feels that meditation, excersize and a medication free life will cure me of my conditions, I feel frustrated, judged and try to hang on to hope while trying to manage my conditions the best way I know how.
    If you’ve read all this, thank you for listening, sorry it was so long, and PLEASE, if you come across someone living with an “invisible disability” treat them with the same understanding and compassion you would if they had cancer as I’m confident they receive enough judgement. Everyone needs understanding and compassion in this life.

    1. Lana, I am really sorry to hear you relay this story. I appreciate you taking the time to write it. You sound like a very gracious, patient and strong person in the face of all of this! Don’t let anyone steal your joy of how hard you are working to fight for yourself, take care of yourself, and live with dignity. Hold on to that inner strength and self-respect. Just dealing with chronic illnesses is so much work regardless of the pain and stigma! In our community, we are building a movement that lifts the consciousness of everyone towards respecting and addressing chronic illnesses that are not yet fully understood. Maybe, one day this comment will be in a history book!
      Have you heard of our Living with ME Support Group? I recommend you join to find camaraderie with people going through the exact same struggles as the one you described: https://meaction.net/2018/09/06/nih-update-collins-will-address-our-demands/
      Maybe someone can suggest a better heart doctor who practices in your area!

      1. Susan Timewell-Jeffs

        To all of you who have bravely told your stories today I want to say that you all need to find better doctors. I too have ME/Fibro and Chronic Daily Migraine. After working through 28 yrs with this disease, dragging myself to and from work I finally quit and went off on disability. When I started into Menopause the Fatigue and migraines became worse and I had to detox myself off Triptans from all the yrs of taking 3 a day just to manage to stay at work. I have a good pain specialist who is very empathetic and encouraged me to stay on disability. She also encouraged me to try Medical Marijuana for pain and my Migraines. I haven’t found the right blend yet and I’ll only use the Oil. Novartis’ new migraine shot Imogene will be available in Canada Nov/Dec this year and I am breathlessly waiting for it’s arrival. I’ve been in bed for almost 4 yrs because of the ME connected migraines and I’ve become week. Meanwhile ME/Fibro research is moving ahead quickly now. Become members of all the Information Newsletters. I feel someone is going to find something to help us all soon. Keep your spirits up. It feels hopeless but medical research is at a point where it is moving very fast now. It will be our turn soon. Sue

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