Depression Poll

[MeSci]

I was pointing out that some diseases get more respect than others. Cancer is on top of the list.

The point could have been made more accurately and sensitively.

 

[Valentijn]

I was pointing out that some diseases get more respect than others. Cancer is on top of the list.

Acute and visible issues get more sympathy. Chronic, invisible, and/or terminal illness get that awkward cessation of contact.

I think someone was pointing out that after the sympathy phase wears off, people move into the "that's too depressing to think about" phase and start to avoid the ill person. Even if they believe the disease is real and deadly, they might feel a need to separate their lives from the ill person, to reduce their own trauma when a friend dies.

Cancer patients also often get blamed for smoking, not eating perfectly and not exercising obsessively - even though those factors have little or nothing to do with most cancers. That creates much of the same stigma which ME patients face, just with a slightly different source.

Cancer patients don't deserve to be envied, in my opinion, or anyone with any chronic health problem. It all sucks, even if some diseases suck more than others, or suck in different ways. And I think it's important to recognize and respect how much it sucks for them, even if we think some aspects of their disease are less problematic than ours.

 

[Kati]

The point could have been made more accurately and sensitively.

i apologize, semsitivity and accuracy are both lost with my cogn

Acute and visible issues get more sympathy. Chronic, invisible, and/or terminal illness get that awkward cessation of contact.

I think someone was pointing out that after the sympathy phase wears off, people move into the "that's too depressing to think about" phase and start to avoid the ill person. Even if they believe the disease is real and deadly, they might feel a need to separate their lives from the ill person, to reduce their own trauma when a friend dies.

Cancer patients also often get blamed for smoking, not eating perfectly and not exercising obsessively - even though those factors have little or nothing to do with most cancers. That creates much of the same stigma which ME patients face, just with a slightly different source.

Cancer patients don't deserve to be envied, in my opinion, or anyone with any chronic health problem. It all sucks, even if some diseases suck more than others, or suck in different ways. And I think it's important to recognize and respect how much it sucks for them, even if we think some aspects of their disease are less problematic than ours.

While I agree with much you said @Valentijn , your last point I dsagree slightly.

See I was working as a RN in a cancer hospital with a research center right across the street. Patients could get a next day pet scan if required. Sometimes same day. We had hundreds of clinical trials. Each tumor group had dozens of protocols. Physicians traveled all around the world to attend, sometimes present at conferences. There were case comferences for difficult cases. Patients (women) were also invited to a pampering night where they would learn how to apply make up and for those who couldn't afford one, to pick a wig.

I am envious of an organized, respected and well funded disease.

 

[GracieJ]

I downloaded a copy of DSM5 the other day and skimmed over it. It really needs to be scrapped.

The brain/body illnesses that create horrendous suffering and destroy lives need a new definition. @Hip I do respect your knowledge base on mental illness, having just read your latest posts here, but the defining of "disorders" has gone waaaaay too far when it makes normal human behavior into pathology.

Stigma? I have a story or two for those who think we should not be concerned about this. You cannot ignore stigmata when you live with people or develop close relationships.

Tell a new boyfriend you have a history of depression, in the past, resolved - and watch your IQ seemingly drop 80 points when they start infantilizing.

I grew up in a closed society where mental illness was considered shameful and a character weakness, and I guess your family member is supposed to be hidden away in a back bedroom and ignored. I did not have depression - yet. I was withdrawn emotionally because of mental and emotional abuse. I think that was the trigger, a bad and unending situation that then kicked off biology. My mother took it to the extreme, choosing to ignore me and withhold love to "toughen me up." I grew up isolated and alienated in a houseful of people, and to this day I am scapegoated for everything wrong in the family. Years of counseling have shown me the dysfunctional patterns of rigidity similar to alcoholic family systems (any excess), and on learning the many faces of mental abuse, I began to heal emotionally. Scapegoating was a huge issue, and it was a relief to understand it. My mother would gaslight and mock me. It was awful. I finally have had to stay away from family members completely. They hear everything I say with a skeptical filter, judging my credibility because obviously I am "not all there." Ha, ha. Saying these illnesses are permanent and lifelong sells drugs. I think they can be healed.

Although I have emphasized the difference between organic physical illness and situational events, of course the two become intertwined. I do not know if "biological permission" would have allowed depression to develop if I had grown up in a loving environment. I will never know.

I also know that once I had a course of antibiotics at age 11 for bronchitis, my life changed forever. In retrospect, what many call "CFS-lite" showed up in my teen years. Insomnia began at age 12. Energy was always low, whether because of depression, sleep deprivation, or the beginnings of a neuro immune disorder. I would guess all three.

The shocker here for me is that I am openly talking about it. I am in my 50s, and finally feel safe enough to discuss it. That is pathetic by itself.

I like the yes/no format of the poll because of the discussion it sparked.

I think the stigma is hard to accept and/or ignore because it is as damaging as any other prejudice.

 

[chipmunk1]

I don't think you realize how offensive this comment is to someone who has dedicated their entire life and career toward helping people within the field of mental health and social work. There seems to be this often rabid bias on PR against the entire field. Everyone hates it when generalizations are made against people with ME/CFS (I hate this as well) but no one seems to have any problem with trashing an entire group of people (social workers, therapists) as if they are evil and not human..

ok i forgot that there might be some therapists on the board. I will remove it if you find it offensive.

It's a hyperbole but in my opinion there is also some truth in it. I don't think that mental health professionals as individuals are evil i think many or most want to help but the field as a whole does sometimes seem to care more about their own theories and existence than the patient's wellbeing.

 

[ukxmrv]

The UK Guardian newspaper had this article on depression and inflammation. It's not very well written I think but a few interesting nuggets

http://www.theguardian.com/lifeands...tion-inflammation-immune-system?commentpage=1

"As evidence like this continues to stack up, it’s not surprising that some people have shifted their attention to what might be causing the inflammation in the first place. Turhan Canli of Stony Brook University in New York thinks infections are the most likely culprit, and even goes as far as to say that we should rebrand depression as an infectious – but not contagious – disease."

 

[luludji]

It's not a required or optional part of any of the ME/CFS criteria, nor listed as a symptom, and I think all except Oxford generally exclude or clearly differentiate patients with clinical depression versus ME.

Of course, patients can have both, but in that case they should still fulfill the ME/CFS criteria even with depression successfully treated. Oxford, on the other hand, explicitly embraces several mood disorders.

So while ME/CFS and depression may have a few overlapping symptoms, they also have symptoms which clearly distinguish them from each other. The confusion only arises because psychobabblers like to start their research papers by describing depression as a common symptom of ME/CFS - even though it clearly is not. But if they repeat it often enough, some people will believe it anyhow.

I must say, I am not so sure about all this distinction-making and labelling. There is not enough known about the pathofysiology of ME ánd depression, but in both cases braininflammation is thought to be present. I think confusing the two is as dangerous as forcely wanting to separate the two.

I see both depression and ME as physical illnesses, so in any case I don't believe in any psychotalking, CBT, none of that. So even if depression is a common symptom in ME, then I think psychologist have nothing to do in this field (sorry dr Jason, you are the best anyway!). Only curing the underlying illness may improve symptoms.

Thinking of braininflammation as the most important pathology in ME, it would not surprise me if this is a probable cause of a wide range of mental unwelness, and even probably characterchanging. But then, most of us can learn to live with this, though it is not easy most of the time.

Oh, edit, I want to apologise to gingergrrr (is that correct) too. Indeed, I stopped believing in the whole "bio-psycho-social" (as we call it) concept. I worked with it for years, I must confess. But it is like falling of religion, I cannot at all believe in it any more, not in the underlying concepts and ideas.
But I do believe in supporting and comforting, helping and nursing. So that is what we do.

 

[andre79]

What about this new theory that mental diseases doesn't even exist, but they are all symptoms of organic illneses triggered by a foreign factor? Call it toxins, viruses, bacteria, poor nutrition, mold, or whatever.

I even have my own doubts about autoinmune diseases. Why would the system that was created to deffend you, attacked you? Is our body so stupid? I doubt that.

I bet that if HIV had not been discovered in the 80's, today we would have a bunch of doctors saying that AIDS is an autoinmune disease of your inmunological system attacking itself, and probably treating it with inmunosuppresants. Brilliant!

So, the true cause of depression, is yet to be discovered, but in the mean time doctors should stop accusing their patients that they are depressed because they are weak, or they did something wrong. Not helping at all.

 

[Bananas]

I even have my own doubts about autoinmune diseases. Why would the system that was created to deffend you, attacked you? Is our body so stupid? I doubt that.

This is a really interesting question. I spent a lot of years on threads about infertility as I tried desperately to have a second child. The theory is that your immune system identifies a foetus as a foreign body, and aborts it, often before you even know you're pregnant, and if you've had one successful pregnancy (as I had) your body goes into a state of high alert which prevents a second pregnancy from sticking.

I tried everything to suppress my immune system, and had tests which showed, sure enough, that I had high levels of TNF alpha and lots of other stuff, which made early stage miscarriage more likely. I could possibly have guessed this anyway, having had a mother who had her heart valve savaged by her autoimmunity, acute lupus, osteoporosis and dowager's hump, fertility problems, and a father with hypothyroidism and rheumatism. I also have hypothyroidism, rheumatism, ulcerative colitis. So a double genetic whammy for me!!

The thing is though, it is a pay off. Both my parents lived well into their eighties, in fact my father died three months before his 90th birthday - probably would have lived longer without the smoking and the fried breakfasts Your autoimmunity will kill off cancerous cells with the same ferocity as it kills off a thyroid gland. It is like a superannuated policing system. I'm not saying it is a good thing, or a bad thing, but some people believe it is a stage of evolution where the human body has perceived external dangers to be greater than internal ones, and preferred the protection of the individual organism from external toxins or tumours, to the reproductive imperative.

Autoimmunity may well preserve the individual for a lot longer than impaired immunity.

 

[Bananas]

When I think of depression, I don't distinguish it from sadness, fatigue, etc. I don't get so technical and tear apart the word.

I wake up and think, I'm tired. I live alone and my life didn't turn out how I wished it did. It's freezing here, I have SAD, I'm perimenopausal. I want to do something today for the sake of doing something, but do I want to go out in 14 degree weather? Next up: pain. I'm in pain. My mid back is hurting.

I want more than this. I want more of a life. I would say I'm depressed and there's nothing wrong with that. I'm not suicidal. Not even close. Am I always feeling like this? It's worse in the winter, but yes. I always want my life back, to not have pain and to not be sick so there is always a low level, sometimes high level of sadness, depression, etc. I can laugh, I am not catatonic but I'm down.

I don't gauge peoples mental state on my mental state. I believe Gracie J is happy.

but I would think that if someone was sick everyday, dealing with POTS everyday (I don't have POTS), unable to get out, or whatever....if that was going on, they would be depressed. That would be the normal reaction. Key word; normal.

If they've come to a place of total peace and tranquility over being home bound, housebound, etc, I would feel that that's a shame. It's good that they are accepting this, I guess, but I know I couldn't and most couldn't.

And dare I throw that out there, for fear of being ripped apart but, it's how I feel. How can anyone be overjoyed with this thing?

Everyone's level of illness is different. If you are out and about, have help, a family that's supportive, you may not feel depressed. The key word also is: HELP.

If you lost your house, can't afford meds, don't have that help, (I'm not even talking about myself) your significant other isn't the best.... depression probably is there.

I find your post very moving, and it has made me think, and a lot of it chimes in with our experience. The first thing was acceptance, and that took a couple of years. A close friend told me to get out of my marriage because I didn't have to have this illness of his. I didn't get out, and she is no longer a friend. But we had to accept that the life we had 'didn't turn out how (we'd) wished it did'. What we have is a kind of semi-life, built around our limitations.

We want 'more' too. I still look at holidays he couldn't manage, want to visit countries which are too far away. We used to drive round Europe before he was ill, and two summers ago I drove our son round, and I keep thinking he was there, but he stayed home. I am sometimes about to refer to a shared experience, but realise I shared it with a thirteen year old adolescent instead of my life partner!

I don't think anyone could really be in a 'place of total peace' being housebound, but my husband spends a lot of time at home. For the first two or three years we raged against it, and that did no good, so it helps to narrow your focus a bit. I think of it as like living in a stately home, but being told you must spend the whole time in the library and the rest of the house is closed off to you, whilst others may explore it. So our answer is..... read the books. Paint the view from the window. Squeeze whatever you can out of the limited space. Lots of people will die, never having visited China, which is worth remembering.

But what I think gets me most about what you are saying is when you say 'I live alone' because I think our saving grace is being together, and having our son and two foster children. Our son is funny - not always intentionally - but he has kept us laughing for the last 16 years, and our foster children give us something else to worry about, talk about, focus on. The worst that M.E. can do is disconnect you. It must be very hard to 'stay in the game' if you are going through it alone, not just because nobody is taking care of you 24/7, but because you aren't taking care of someone else 24/7 either.

In terms of depression, I think some of my opinions and the things my husband says about his mental state and coping mechanisms with M.E. are largely ameliorated by aspects of our situation, and I hope I don't come across as smug. There is a bleak underbelly in our lives, which is M.E. and it sometimes takes centre stage to thwart our best laid plans and dreams.

 

[Research 1st]

A few points I was thinking of in terms of statistics and depression in ME CFS.

I wonder if we'd ever know if those with less reported rates of depression are those with families/carers/partners who believe them, vs those who are less believed?

Also if having a doctor who believes you affects rates of depression?

One could have no doctor access, but keep going mentally because they have family member (e.g. mother or husband) who sticks by them for life. Perhaps I was a little naive not to remember this as an 'ME Phenomena'. (The people I just thought of who seem remarkably cheerful, they almost always have a parent who has sacrificed everything for them)

I really feel for the people, who literally, have no one at all in their lives to support them mentally. . I expect these are the folk who commit suicide as they have nothing to live for and lose all hope. Talking is certainly an incredible thing and a way to get through each day if you have someone by your side despite enduring awful unrelenting symptoms.

 

[Hip]

@Hip I do respect your knowledge base on mental illness, having just read your latest posts here, but the defining of "disorders" has gone waaaaay too far when it makes normal human behavior into pathology.

Do you have any particular conditions in mind which you consider normal human behavior, but which psychiatrists have classified as a mental health disorders? ADHD is the example people often give of psychiatrists going too far.

 

[Misfit Toy]

@Bananas -yes. I think a lot of people can get through if you have a shared experience. When I lived with my mom years ago, even with her being an alcoholic (which she denies) we had a rhythm. There were shows we watched together and if I was sick, she would go and get my medicine or cook me a meal. Even if we weren't in the same room, just knowing someone else was around was a huge comfort. It was a dysfunctional relationship because she thought I was needy due to being ill, but the irony of it all is that my mom was and is way more needy than I will ever be. She needed me. Still, we stuck it out because of my illness and actually her need to have me near. I think a lot of marriages can be like that. There's a need. Not saying that yours is like that..but people stay together, because. Because it's hard to meet people and even with each others quirks, it's easier than being alone.

When you are alone and sick and really sick, it takes a whole new level of strength and I have it, but I am tired of it. Last night I slept 10 hours and I woke up today and thought..."what will I do today?" I spend 90% of my time alone, which is no way to live. Or, I am helping out my 85 year old aging mom who is not well. I have no one to go on vacation with and in my mind nothing to look forward to. I have no plans for a vacation, or any other outing and my health has been so precarious that it makes living hard. So, I went out for a ride and tried to go to a movie, but was alone and walked into a movie theater today and there is now assigned seating.

And...who would have been next to me if I had stayed at the movie that I just paid for? One of the most uncaring, un-compassionate women I have ever known in my life...a once friend of mine from high school. Even if I had changed seats, there were only 5 people in the theater and she would have seen me and there would be tension that you could cut with a knife. So, I left the theater and sat in my car feeling like....why? I have a good moment, I got out and I am supposed to sit next to a total jerk of a person. An absolute enemy. If I had been with someone, it wouldn't have been so bad, but it reminds me of how much I am always alone.

And as you get older, it gets worse because most of my friends are married. Almost all of them. I only have one single friend actually and she works non stop.

Many know the story, but I became ill when I was 18. I didn't finish college, I didn't get the guy that I adored..or any guy after that due to my condition, my Interstitial Cystitis making it very hard for "sex" or a new relationship to get off the ground. Then the Fibro and unending pain..physical pain.

This illness has drained me. I am still in the game, but it's been forever and for me there will never be acceptance. I can't. Another reason I can't accept it, is because it's ever changing. I have been diagnosed with 5 diseases this past year and I have been sick for over 26 years. It's too much and I would be in total denial to not be depressed. I will never be that kind of person who is indoors or super sick and "okay" with it and to be honest, I like that about myself because when I was well, I was the life of the party. I have too much life in me.

To have had that much soul or spirit, I will never truly be okay with these limitations and especially with what you said; without someone to share my life and help me to take my mind off of me.

BTW, taking care of kids is a lot, so I applaud you for that. I would love to have a pet, but my apartment doesn't allow them and I can't get out in this weather and walk a dog. I never know how I will feel. It's easier to do that task with again...another person.

 

[Gingergrrl]

Oh, edit, I want to apologise to gingergrrr (is that correct) too. Indeed, I stopped believing in the whole "bio-psycho-social" (as we call it) concept. I worked with it for years, I must confess. But it is like falling of religion, I cannot at all believe in it any more, not in the underlying concepts and ideas.

You do not need to apologize to me but it is so hard for me to relate to these concepts as the terms in the U.S. are so incredibly different from the terms in the U.K. As a hospital social worker, I did an assessment of each patient that addressed their biological, psychological and social needs. And to clarify, I was NOT working with ME/CFS patients and was working in mental health.

It was the social worker who put the entire puzzle together and maybe the doctor spent five minutes explaining a new diagnosis or medication to the patient but they were too overwhelmed to take the information in having just gotten out of the hospital. The social worker organized for the patient and family to meet with the doctor at length and get more medical info (biological) as well as providing much needed supportive counseling (psychological) and helping with basic social needs (if the patient was homeless or could not pay for medications or needed to apply for disability, or was living in an abusive environment at home, etc, etc.)

All three were an important piece of the puzzle and the social worker was the liaison with all the other disciplines on behalf of the patient. I worked with patients who were acutely suicidal and floridly psychotic as well as patients with co-occurring drug and alcohol issues which interfered with their treatment. We fought to erase any stigma so all issues were addressed openly and our program had waiting lists that were miles long.

I don't know what treating depression has to do with the falling of a religion and I don't know how you can treat depression without looking at the biological, psychological and social needs of the individual patient. I have kept my mouth shut for six months of posting on PR while people literally every day trash the profession that I devoted my life to and at this point it is just too tiring for me and a real drain on my energy so I am speaking up even if that means I do not stay on PR.

 

[Research 1st]

I agree you can't treat depression easily, but the problem we have in society is the way people are told they have depression when they may not have it. Conversely, what is depression? There is no biomarker. Just like CFS, depression can be a waste-basket diagnosis where patients can wallow in ignored (with all the dangers associated to this), or a label people can use to sell some new fangled 'treatment' for depression with no evidence base it works, because depression, per se, cannot be proven to exist with a simple test in the doctors office. So we have massive distortion of treatment effectiveness, from a myriad of therapeutic interventions, none which really need to be shown to work other than 'self reports' back, self reports which are rarely followed up long term.

No wonder depression has become over time, a throw away diagnosis, as CFS has become.

The placebo affect in people diagnosed with depression is incredibly powerful, sans major depression.

In a well publicized study (JAMA) looking at data of 718 people:

''The magnitude of benefit of antidepressant medication compared with placebo increases with severity of depression symptoms and may be minimal or nonexistent, on average, in patients with mild or moderate symptoms. For patients with very severe depression, the benefit of medications over placebo is substantial''.
Source: Fournier et al, 2010.

I think that study is a classic, as it demonstrated that your average 'your depressed madam' diagnosis in a GP practice is largely useless and the 'belief' in medications working was as powerful as antidepressants!!! Conversely people with severe depression (arguably major depression a biological disorder) medications are more effective.

So just as with CFS, we have a huge problem.

Define CFS, and define depression acurately. Depending on how you define it, you have different outcome, and different level of 'concern' about patient welfare, and a different level of ethical behavior of therapists who claim various things about their 'treatment'. Some would argue severe major depression is largely un treatable and MD should be classified as a neurological condition, or indeed an neuroinflammatory condition as schizophrenia arguably should, but both languish is 'psychiatric' areas of medicine due to the behavioural changes these physical disorders cause.

Tragic for patients with severe depression and their families.

Naturally, on this forum and wider society some ME and organic CFS patients have had their lives devastated by psychologists and psychiatrists accusing them of being depressed (when they aren't) and some patients becoming permanently relapsed by following the advice by therapists (such as OT's and physical therapists) that exercise won't harm them, and it 'works' for CFS. In extreme cases, patients can die from this advice, like the UK Member of Parliament who collapsed and died after attending a Gym after being advised he could exercise himself well.

Things get incredibly complicated, when people with ME CFS then develop forms of depression from the consequences of the organic disease ME CFS. These people, are in real danger in my view of missing out on practically all 'tests' (post diagnosis) for their fluctuating and potentially life ruining condition, as once they are 'depressed' various accusation and suspicions run rife. Remember in the UK and Europe this happens anyway, especially to young people. A favourite of European psychiatrists is to blame the mom of the child (under 18) and threaten the family they can have their child taken from them, unless the CFS ME child returns to school and stops misbehaving by laying in bed all-day.

Anyone who's been incarcerated in a psychiatric ward with ME CFS will tell you this, where psychiatrists can legally starve ME CFS patients and won't even give them fluid (water) unless they 'walk' for food like an obedient dog. This still happens in UK and Europe and presumably other parts of the world, It genuinely worries me,what would they have done to depressed patients who have a history of depression? I hate to think.

Thus if there is a cognitive choice (in some people), being severely ill with ME CFS, one must do everything in their power not to get a low mood from negative thinking, and end up depressed as ME CFS patients risk being abducted from their home and locked in a room and not let out. (Young women like Karina Hanson in Denmark).

As I said, literally, God help the people with ME CFS who get depression, as without depression patients can be refused to be let out of locked wards by CFS psychiatrists, who are quite frankly behaving like modern day priests wanting patients to 'confess' to the 'real' reasons they have ended up bedridden.

Really we need a research paper on the amount of patients who feel depressed or have gotten a clinical diagnosis of depression from the actions of the medical profession against the patient by accusing them of faking symptoms for attention, secondary gain, and 'avoidance', what CFS 'researchers' accuse ME CFS patients of doing!

There must be wide ranging mental health consequences of blaming ME CFS patients for their disease process, and for relapsing after GE/CBT but it appears no on has ever published on this matter.

 

[Valentijn]

I have kept my mouth shut for six months of posting on PR while people literally every day trash the profession that I devoted my life to and at this point it is just too tiring for me and a real drain on my energy so I am speaking up even if that means I do not stay on PR.

They're usually intending to trash a very small subset of BPS practitioners - the ones who believe in and promote psychogenic theories. It sounds like you were doing the sort of thing which those psychobabblers merely use as a ruse to gain an abusive foothold in various biological diseases.

BPS should be looking at all three factors, as you did, and assisting people struggling with them. But the psychobabblers have twisted the entire concept, attributing all physical problems to psychological origins. They only delve into the social realm to explain that our unfulfilling lives result in the psychological dysfunction, but perversely do not attempt any social interventions or assistance.

I dare say that 99% of people who criticize psychologists are not talking about anyone beyond this very small group. But people have a tendency to be a bit lazy with language, and will often just refer to them as "psychs", instead of specifying that they are talking about a unique brand of BPS psychosomatic quack typically owned by insurance companies, not actual therapists who want to help people.

Of course, this is complicated by the domination of psychogenic theories in some countries, meaning ANY therapist seen by an ME patient is more likely than not going to believe that ME/CFS is truly fixed with CBT and/or GET. Most of these therapists are probably well-meaning, but the treatment and outcome are abusive regardless.

Hence psychologists and psychiatrists generally pose a serious risk to every patient in the UK and the Netherlands, and we have to avoid the entire profession as a matter of course. This leads to a lot of distrust and distaste for the profession in general, and some of it is warranted - why do these therapists not think critically about what they are told by an authority figure? Why do they not listen to patients and attempt to verify the truth of what the patient is telling them before dismissing it?

Most therapists and even doctors do fail us in these situations, even if it's not really their fault - they're just doing what they're told by people who they trust. So therapists can end up in a very bad situation - they become unwitting tools used by nasty bastards to hurt sick people. They are usually well-intentioned, but they all look the same to us when we're the ones being harmed.

 

[Misfit Toy]

People talk of the different levels of depression and almost like if it's caused by an illness it's really not true depression.

When I first came down with Epstein Barr I was sleeping around the clock. 8 months that lasted. Then I went into not sleeping. I was up all night. My sensitivity to noise was through the roof, I was vomiting and having panic attacks. There was no color in my life. My boyfriend at the time was worried sick. I lost 15 pounds and was 18 and looked anorexic. If I had anxiety which would come on out of nowhere, I would throw up. The EBV was messing up my brain. My adrenals were spewing adrenaline. I was told, "welcome to your new life, you have Chronic Epstein Barr. Quit college, rest and try and get better but know you may never get better." Just fab.

A month later after weeks of NO sleep, vomiting, panic, depression and dizziness...I went to a crisis center. I couldn't go on like this. I was depressed. My mom tried telling me, "it's the illness."

Let me tell you something...I still remember it. It didn't matter if it was the illness. Life was black. There was no living color. I was 18 and obsessed with the idea of checking out. I was panicking, sweating, breathing into paper bags...my life was upside down. I needed help. Clinical depression, depression from a virus? Who cares! I needed help.

I went on Tofranil and finally slept. Things weren't as bad. I was still anxious, sick, fevers...but I wasn't vomiting anymore. I had to now learn to live with a bomb that stopped my life abruptly. Sudden onset.

To me, it doesn't matter if it's situational, clinical, if someone has true classic depression...how or why should they be offended if someone else has situational depression? Is it any less disabling or painful?

My friend was the caregiver of her husband who had a stroke at age 38. She took care of him but became depressed. They were married for 5 years, so happy and now he couldn't talk, was in a wheelchair and she was cleaning up his diarrhea. Next up, dialysis. Full time job on top of her full time job. They lost their house, their life. She became so depressed that she stopped going to work, started sleeping constantly and had diarrhea. Does it matter that it was situational? Why should a true depressive be insulted if thats a reason for someone's depression?

Pain is pain. It doesn't matter why, or how.

What matters is that you are in distress. Someone needs to take that seriously. If someone who was depressed and suffered with major depression told me or someone I know.."well for me, it's chemistry, but yours isn't as paramount, it's situational, I would tell them to stick it where the sun don't shine." Situational can lead to clinical. Look at PTSD. Some people never recover from traumas in their life.

Pain is pain.

 

[chipmunk1]

what is depression?

The problem i that no one knows exactly. It is a set of symptoms, a diagnosis perhaps 150 years old.

The concept is probably outdated. They didn't know any better and classified it as an illness of the "soul" back then. Later it was discovered that biological treatments could induce depressive symptoms or reduce them.

Suddenly depression was biological but since the psychogenic theories were already well established they had to come up with a bio-psycho model.

There is no objective lab test for depression. It could be hundreds of different things ranging from sadness/grief reactions/result of prolongued mental stress to hormonal imbalances, hypothyroidism, inflammation, infections, genetic illnesses, neurological illness...

Depression is the catch-all term for something that is poorly understood and can not be objectively diagnosed.

 

[MeSci]

Acute and visible issues get more sympathy. Chronic, invisible, and/or terminal illness get that awkward cessation of contact.

I think someone was pointing out that after the sympathy phase wears off, people move into the "that's too depressing to think about" phase and start to avoid the ill person. Even if they believe the disease is real and deadly, they might feel a need to separate their lives from the ill person, to reduce their own trauma when a friend dies.

Cancer patients also often get blamed for smoking, not eating perfectly and not exercising obsessively - even though those factors have little or nothing to do with most cancers. That creates much of the same stigma which ME patients face, just with a slightly different source.

Cancer patients don't deserve to be envied, in my opinion, or anyone with any chronic health problem. It all sucks, even if some diseases suck more than others, or suck in different ways. And I think it's important to recognize and respect how much it sucks for them, even if we think some aspects of their disease are less problematic than ours.

Thank you, @Valentijn. My friend has had leukaemia for almost as long as I have had ME (about 19 years), yet I seem to be the only person in my area, where she used to live, who knows that she has leukaemia. Others were/are under the impression that she was just complaining about nothing. It may be a consequence of malicious gossip started/spread by a very nasty person who used to work for the woman's husband. I don't think my friend knows about this disbelief, and would probably be very upset if she knew, so I am not telling her. (The nasty character has probably done the same about me, going by her comment to me once that it must be nice to be able to sit in the sun all day...)

Most cancers are not visible. The baldness that occurs is a result of chemotherapy. This is increasingly being replaced with biological treatments, at least for some cancers, so the cancers will be as invisible as our illness.

My friend has led a very healthy life. She has helped a drug company to get their drug licensed for her illness by participating in a clinical trial. Once it was licensed, the company put the price up, I believe. It is (now) so expensive that the NHS will not fund another course.

Even if she had got free home-cooked food, she might not have been able to eat it due to the side effect of agonising mouth ulcers, and she might not have been able to digest it due to the destructive effects on her gut towards the end. She is already thin. Chemotherapy too causes major gut damage as well as hair loss, hence vomiting and diarrhoea. She has been through that, and surgery (splenectomy).

So she is planning to help another drug company get another candidate drug licensed by participating in a new trial. New drugs are always risky, and some people have died in earlier trials. But she will die within about a year if she doesn't try something.

Even licensed cancer drugs commonly have side-effects that are worse than the cancers themselves - so bad that some patients cannot face them any more, preferring death. The drugs also commonly only provide a few months of additional life, or even kill the patients - a patient may be at as much risk of dying from the drug as from the cancer.

I know this because I studied cancer as part of my Master's degree and have also researched the licensing data as part of my freelance work.

I have told my friend that I will try to crowdfund the money for another course of the previous drug, so that cost should not be a factor in her decision-making, but she will probably find it hard to ask me to do it, so I will have to keep reminding her that it is very easy to do and the offer is still there.

I respect that @Kati may have a lot of insight about how patients are treated in hospital, but she has not seen those same patients trying to live their daily lives, so cannot know how hard it can be, let alone those who can't get treatment.

There will be people reading Phoenix Rising who have cancer, MS and other conditions which may have been trivialised on here, as well as their carers. It does us no favours as a patient group to give others the impression that we are so self-absorbed that we don't care about them.

So - other diseases are well-respected. People recognise them as genuine. And then? It doesn't necessarily mean that people can get effective treatment, social support or even palliative care. They too may live alone, be poor, etc.

 

[MeSci]

i apologize, semsitivity and accuracy are both lost with my cogn

See I was working as a RN in a cancer hospital with a research center right across the street. Patients could get a next day pet scan if required. Sometimes same day. We had hundreds of clinical trials. Each tumor group had dozens of protocols. Physicians traveled all around the world to attend, sometimes present at conferences. There were case comferences for difficult cases. Patients (women) were also invited to a pampering night where they would learn how to apply make up and for those who couldn't afford one, to pick a wig.

You saw patients at what sounds like a particularly well-organised establishment. You saw those who could get on the trials, those who could actually get there. The clinical trials are essentially to enable drug companies to get their drugs licensed. Then - at least sometimes - the companies put up the price of their newly-licensed drugs so that patients can't get funding for further treatment, and the companies go on to try to get their next new drug licensed via new trials, and so on.

If the make-up is to conceal the cancer or the effects of treatment, surely this and the wigs should just be available to all those patients who need them without having to travel, ill and exhausted, yet again for a special event? If the damage has been caused by treatment, it is iatrogenic, and it is the health service's job to fix it. If a more logical process were used to develop drugs (see my blogpost) these side-effects would not happen, and patients would be properly cured more quickly.

I would still rather have ME.