The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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I always think it would have been better to be a junkie than to have this

Discussion in 'General ME/CFS Discussion' started by eric_gladiator, Jul 7, 2017.

  1. eric_gladiator

    eric_gladiator Senior Member

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    I look at the number of young people around me who use drugs and even the worst cases are a lot better than me. They can enjoy life despite being addicted, they are given a salary if they have a drug disability. I instead see myself abandoned by the doctors, misunderstood by people, wanting to live but very much to my regret I can not. This is not fair and I think nobody in the world should suffer it
     
  2. Mesurfer

    Mesurfer

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    Although "junkie" isn't really the nicest term to use and many addicts fell into the grips of addictionI by accident and deserve to be treated with respect. I do understand what you are saying. As I also think about this often. It doesn't seem fair, but I guess life isn't fair...
     
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  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I have been an addict and it can be hellish. I didn't know that I was risking addiction, and increased my dosage when I split up with my boyfriend. What followed was a period of struggle and addiction and eventual loss of my job (which I'd had for 9 years and I was getting my health back at last, after suffering serious weight loss and near-insanity at times).

    This is different, but I don't think we should look down on addicts - they all have different experiences and different reasons, and many lose their lives in horrible ways.
     
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  4. Webdog

    Webdog Senior Member

    I came to a similar realization when my longtime addict brother-in-law was given rehab after rehab until he finally got clean. Medical care and sympathetic doctors allowed him to eventually get his life and career back. Insurance covered it all.

    Meanwhile, getting an ME/CFS diagnosis took many years. Finding doctors who believe ME/CFS is real remains a challenge. Specialist treatment was not covered by insurance.

    All I did was get sick and never recover. I never chose to consume this illness. Why am I not given the same long term supportive medical care my drug addict brother-in-law received and continues to receive?

    Now, I would never wish drug addiction on anyone, and I've seen how successful rehab can be. However, it's blatantly obvious to me that ME/CFS can be a more medically stigmatized condition than long term drug addiction. I still don't fully understand why.
     
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  5. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    It's because it isn't fully accepted still. Drug addiction is.
     
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  6. Daffodil

    Daffodil Senior Member

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    i always used to think it would be better to serve a life sentence in prison...at least you can read, study, be somewhat productive. with CFS, it's like you are in a coma. well worse than a coma really
     
  7. Esther12

    Esther12 Senior Member

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    Addiction seems like it can end up really destroying so much of peoples' identities that it can seem even more scary to me.

    Whenever I hear alcoholism being compared to another disease, I now think of this NSFW Norm Macdonald bit:

     
    Last edited: Jul 8, 2017
    Mary likes this.
  8. tyson oberle

    tyson oberle Senior Member

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    If a person has an addiction to alcohol or a harmful drug and his or her life is deteriorating because of it then at least we know what the offender is and that it needs to be eliminated. With ME/CFS many of our lives have been deteriorating as well, but we don't know what to do. I wish there were something to eliminate for me to get my life back. If I had an addiction to drugs at least I would know where to start. Many of us (including myself) with great willpower have tried many different elimination diets with little or no effect. If I had to pick between being a drug addict/alcoholic or having ME/CFS, I would pick being the drug addict/alcoholic.
     
  9. NelliePledge

    NelliePledge plodder

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    I saw my parent die of alcoholic liver disease after having been sober for many years they had a relapse due to my other parent being diagnosed with dementia in late 50s and being unable to cope as a carer due to complexity of dementia symptoms and very challenging behaviour. Eliminating the substance that they use is massively easy to say and extremely hard to do. I would not wish alcoholism on anyone especially myself. I wouldnt wish ME on anyone either (ok well there are one or two notable exceptions I can think of for wishing ME on them :devil:).
     
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  10. Mary

    Mary Senior Member

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    Comparisons can be odious. Addiction is one form of hell, ME/CFS is another, there are many other things, all hellish in their own way. I think about women who are victims of sex trafficking and who would be killed if they tried to get out (or their families are threatened). I can't fathom that existence but it's reality for thousands of women. Life isn't fair. I do wish sometimes that the people who have power over our lives (doctors, NIH etc.) could experience ME/CFS for a month or so, long enough for them to start feeling panicky. One day wouldn't do it.

    Though I do think I know what you mean. If someone is an addict, there is something you can do about. I know several addicts in recovery. They have full lives. And then there are other addicts who never make it and their lives are pure crap. And though it's tempting to say they should just go to rehab or something, I don't know what they go through and it's not my place to judge.

    I know, if we had a choice, or something we could do to recover, I think we would all do it in a heartbeat, regardless of what it was to get our lives back. And ME/CFS is particularly hellish because we go through it alone and have to deal with skepticism and disbelief and bad treatment or just being ignored, etc. - it's crazymaking. I think @Daffodil put it very nicely - like being in a coma, but only worse.
     
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  11. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Except we don't really know what it's like being in a coma. It probably varies a lot.
     
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  12. gabriella17

    gabriella17 Senior Member

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    I work at a clinic where many of the clients have addictions. I see firsthand the kind of lives they lead. Sadly @eric_gladiator, I have often thought the same thing as you. No, I don't wish to have an addiction obviously, but I feel like they do have a better quality of life.
     
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  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Perhaps those at your clinic are relatively lucky. According to this article https://www.nytimes.com/interactive...rdose-deaths-are-rising-faster-than-ever.html there were an estimated 59,000 deaths from drug overdoses in the US last year.
     
  14. gabriella17

    gabriella17 Senior Member

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    Lucky? Not sure that's the right term. All those who are clients of the clinic have a determination of Serious Mental Illness (SMI). If they are clients of the clinic, they are required to engage with the clinic by attending doctor appointments, getting labwork, health & risk assessments, nursing assessments, receiving home visits, case management. We offer numerous psychoeducational groups throughout the day, as well as one on one peer support and family support. We help with getting housing, transportation, counseling, health insurance, referrals to treatment programs and community services. We have wellness coaches, vocational rehabilitation services, and more. The majority are low-income, and quite a few are homeless.

    So, they are lucky, in that they have access to services because of their SMI determination. I think that's why the overdose and suicide rates remain relatively low.
     
  15. belize44

    belize44 Senior Member

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    I have experienced this trend too, meaning that people with drug addictions are treated in a more humane fashion than those of us with chronic health issues, sadly. I am fortunate to have found a doctor out of my living area who is willing to work with me, after having suffered for over six months being turned away or treated poorly by most of the doctors around here.
     
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