Thought for the Day:

Hope is the thing with feathers
That perches in the soul.
And sings the tune
Without the words,
and never stops at all.

- Emily Dickinson

Tuesday, April 24, 2012

M.E. and Depression

When I first heard about M.E., long before I had it, I was told "it's kind of like depression".  At the time, a good friend of mine had had a bad relapse of M.E.  Since I had only known her during remission, I didn't really know what M.E. was, so when asking a mutual friend what exactly she was going through, his response had been to compare it to depression.

Now clinical depression is nothing to scoff at.  It's a terrible illness as well.  It is also an illness with biologic abnormalities and not in any way the "fault" of the sufferer.  I have an immediate family member who has struggled with serious depression, so I understand how disabling an illness it can be.  But when I was told that M.E. was "like depression" it didn't quite correlate with this person I knew.  I had never known her to show any signs or features of depression that I had experienced with my family member.

I remember talking to her during her relapse (she had had to drop out of graduate studies and move home with her parents) and her trying to describe the M.E. to me.  She didn't necessarily sound terribly depressed.  Her M.E. was dominated by the cognitive dysfunction with the fatigue a lesser (but still disabling) factor.  She had gotten sick as a teen after contracting chicken pox (post viral M.E.).  She recovered, only to relapse again about five years later.  (Today she considers herself recovered, is married and works full time, although she still struggles with minor symptoms).

The year I got M.E. after a bad bout of Mono, I reconnected with her and the first thing I said was "I'm so so so sorry".  "I had no idea what you were going through all those years back, I had no idea you were so very sick, I wish I'd been a better friend".

Why am I writing about this?  Well, someone with M.E. who I know through one degree of separation took his own life this week.  It has had me thinking about the role depression can play in M.E.  Obviously, to take your own life, there has to be some level of hopelessness or depression, even if it's a temporary state.

Personally, I don't believe the two illnesses are the same or even close relatives (and most the research would corroborate this). However, CFS or M.E., because it does not have a diagnostic test probably contains a certain amount of heterogeneity within the group diagnosed.  Perhaps some people with M.E. have clinical depression instead, or there is no reason why one couldn't have both. But mostly, I think that because on the whole M.E. is a severe and disabling illness, people get depressed.

I was thinking about depression in relation to myself and asking myself that "could I, or would I ever kill myself?" question.  I doubt I'm alone.  I think most people with moderate or severe M.E. would at least have days where they feel unable to take it any more.  And how many steps are there between the terrible daily grind of sickness with seemingly no end in sight, and taking one's own life?  I don't know.

Of course add on top of the suffering the fact that compared to most illnesses, there is virtually no research being conducted, that most Drs. throw their hands up at the suffering asking if they've tried "exercise" and "counselling', along with the social stigma the person with M.E. usually has to face.

So while I believe M.E is a neuro-immune illness of some sort, perhaps with an infectious factor, I also think that if you're sick long enough, facing depression at some point is almost inevitable.  Wouldn't anyone who was sick at the level of influenza everyday enough to loose their hobbies, jobs, maybe homes, friends/social life and sometimes even partners all while dealing with lack of medical or societal support?

While I've never come close to suicide, I have had many days this past 12 months where I go to bed, 1/2 hoping I don't wake up,  not knowing how I could possibly do another day in this body.  I look to the future and see little hope.  I have no partner, no children (I always thought I'd at least adopt), no career or job to go to, little social life, and few hobbies.  While I do have pockets of feeling less hellatious, they inevitably end with me doing too much and crashing - feeling once again powerless to create any kind of quality of life.

At some level I'm depressed. It seems the more sick I am with the M.E. (the more the fevers, throat, ache, fluiness, chest ache, dizzy spells, fatigue, weakness, and tremors), the worse the depression.  My specialist calls it "reactive" depression, but it's depression of some kind nonetheless.  However, I'm not worried about taking my life at present.  And I hope none of my friends with M.E. ever get to that point.

I think the "cure" for the depression and M.E. combo will  come when they find and offer treatment for sufferers.  If I wasn't forced to spend most my life in bed sick, would I be so down?  In the mean time, I hope that those who are close to that place (of suicide) feel they can reach out to others in the community (myself included) for support.  




8 comments:

  1. Oh, I am so sorry to hear about the man who too his own life. How tragic for his family and that he felt there was nothing to live for. I do agree that the depression one has with ME/CFS is different than clinical depression for sure. Joel and I have called it "situational depression". I am so sorry your low levels of energy and health continue for you. Sending you hugs across the internet and from my heart......

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    1. Thanks Renee, I've been a lot worse in the last few months. I actually had a few decent days this week. I was just a little shocked by the suicide and it had me thinking about M.E. and depression....I'm very sad for him and his friends and family...and that it just got that bad for him. I wish there was something we could do for those who get to that place....But I think networks of support can only help...also talking about it, showing empathy. I think you are very good at this...showing support and care to those in the community when you can.

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  2. very sorry to hear about your condition, upnorth.
    i've also struggle between depression and CFS/ME. i believe, for most CFS/ME patients, their depression is caused by their physical condition.

    "we should not confuse the fact that the vast majority of fatigue patients are depressed BECAUSE OF CHRONIC ILLNESS, not chronic ill because of they are depressed. this is a very important distinction and one that most doctors fail to draw... to treat depression as causing the whole illness is wrong" (i would add "is not only wrong but dangerous".
    ---edward conley, author of "america exhausted"

    my chronic condition has been up and down for all these years, and i clearly recognized that mostly whenever my physical condition changed, my mental state was lighten up. i just had a major relapse which dragged me down for almost two months. now my condition is on the mend due to my diet change (again!)
    i don't know how is you diet but i hope you eating well. it is so crucial to our body, and i've realized that every patient needs to find their best diet by their own.

    hope you feel better soon...

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    1. Thanks for the supportive comments Yun Yi, and I'm glad you're on the uphill again. And glad someone else's mood is so linked to their state of health, it's good to know I'm not the only one.
      My diet has been very healthy for a long time now - however, due to these gut issues (see previous posts) I'm unable to eat much at all at present which is indeed a problem. I'm working on it. Trying various things with the help of a specialist. Thanks for stopping by :)

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  3. I've been reading your blog - appreciating how you write about all this. It helps, somehow, to see the truth of things expressed.

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  4. THanks REading the Signs, I noticed from your blog we have some things in common (besides the M.E.). Passions for writing and a love of nature being two of them.

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  5. Hi Upnorth, so sorry about the man who passed on...this illness is so devastating and can drill pain, sorrow, and hopelessness into the strongest of us. I also appreciated you writing on this; your post resonated with me deeply. I hope your worse period lets up soon, as well. Stay strong!

    Also, you posted a question on my last blog post asking how to get the test done since you suspect you may have Lyme after all (I've read that many people with chronic lyme will show up negative on the other tests), and sorry it's taken a while to get back to you on it, but I did a post on how to get the Lyme test done. Hopefully you can get something useful out of it, though I don't know if I ended up saying anything concrete about it. Maybe it will lead to something quite good?

    On a completely unrelated note, I was hoping you could offer up some advice on how you set up the comments section so that you can reply to individual comments. I'd love to set that up on mine. Thanks ever so much.

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  6. Hi Dolce Vita, I'm not sure about the comments - I think it might have to do with the template you choose? Because I don't remember being able to do it before.

    I would love to pursue the Lyme thing out of curiosity. I've been tested so many times, but the culture test sounded interesting to me. Unfortunately I have not money at present for that kind of thing. But I'm going to back to your post in the fall when things are better for me $wise and consider sending out for it. Thanks so much for sharing that info. Are you going to start treatment soon?

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