Coping with depression
A wide range of difficulties associated with coping with depression were observed. Some of these related to problems dealing with issues which were inherent to depression; that is, factors that could be considered indicators or symptoms of depression itself.
Lack of motivation and inhibited enjoyment were reported by many people (17) as being a problem. Some people reported an inability or difficulty with getting out of bed in the morning, whereas the comments of others suggested they were managing everyday demands to some degree but were struggling to find meaning, direction and pleasure in life. Several people reported difficulties finding sufficient motivation to take the necessary steps to help themselves, and explicit questions were evident regarding whether others felt the same way and wanting ideas to resolve such challenges.
"I hear you! I know that if I do my CBT work and start to challenge my negative thoughts that I will start to feel better, but why can I never be bothered to do it??? ... We have a double whammy of an illness, in that to feel better we have to take action, but to take action we have to "feel" like taking action. It's some sort of a cruel joke."
Oversensitivity, negativity and lack of self-esteem and self-loathing were reported by seven people as being problems, including two explicit questions.
"when you have mental illness things that happen around you hit you harder... it hits us harder, it ALL hits us SO MUCH Harder, such small things as not being asked if you'd like a Coffee, so mundane as that can hit you really hard on some of the tough days."
Sleeping difficulties and tiredness were reported by 19 people as being a problem. Problems related to disturbances in sleep onset, maintenance or adequacy. Many people complained of tiredness or exhaustion, some of which - but not all - they attributed to inadequate sleep. The effects of tiredness appeared to cause substantial distress and have a major impact on their lives, and one person asked others explicitly how they dealt with it.
Irritability and not knowing what to aim for in life was the subject of an explicit question, as was how to cope with anxiety and feeling overwhelmed. Several people reported the presence of physical symptoms (i.e. pounding heart, bad headaches, dizzy spells and teeth grinding) that caused them distress and two people asked others for suggestions on how to manage such issues.
Cognitive difficulties and troublesome or obsessive thoughts/feelings were a major problem for many people. A number of people reported struggles with concentration, hypervigilance, racing thoughts and being agitated, and four explicit questions were asked in relation to these. Troublesome thoughts appeared to be particularly upsetting and were reported by 16 people. These were mainly described as being repetitive irrational thoughts which could be difficult to distinguish from reality.
"Things are spiraling beyond my control and I don't like what is happening. My mind keeps processing things and can't stop. Just when I feel that I have distracted it something in the real world screams out a message at me. It might be a song on the radio, someone in my life says something to trigger a thought or whatever. ... I feel like I am losing control and I don't know what to do."
Board rules precluded explicit reporting of suicidal thoughts and self-harm actions. However, there were many subtle references to these problems, with 11 people referring to instances of suicidal thoughts or self-harm. Overwhelming thoughts and despair were reported by another 15 people, five of whom asked explicit questions of others.
"I am struggling so much and it just doesn't make sense... So much to live for but I have lost the will to live. Don't know what to do except to put one foot in front and the next and the next. Please help!"
Difficulties regarding social interactions and loneliness were common and several explicit questions were asked in relation to these issues. The majority of those who reported they felt lonely also recognised their own avoidance of others and withdrawal, but did not know how to resolve the problem. Communication difficulties were also indicated and it appeared that these may underlie or contribute to withdrawal. Some people described a sense of dissociation from others or a need for personal space, with several people referring to being in a 'bubble' including a question asking others if they too felt this way, and reports of feeling 'weird' and 'abnormal'. Interestingly, only one person reported a lack of support from his partner, whereas the majority of people referred to having supportive families.
"Why is it I feel so alone and scared all of the time??? I have a supportive husband and 3 beautiful children but why does that not feel like it is enough ☺ I know I have all of these things as well as more than some people, but why do I feel so alone ??? Is it just me or is it just because I have to deal with this horrible illness that is slowly eating away at me from the inside and is slowly taking a hold of me and I feel it will not let go. I feel so alone."
Nine people referred to experiencing variations in intensity and duration of depression leading to substantial distress, confusion and feelings of hopelessness and a loss of control. The majority of people could not explain the episode and found its unpredictability upsetting, and two explicit questions were asked regarding explanations and advice on "keeping on an even keel".
Many people (23) reported difficulties in relation to work. Some reported difficulties performing their work but continued to function in their jobs to varying degrees. Of these, however, several had received warnings about their performance or felt they were on the borderline of being unable to continue. Even amongst the others there was a lot of uncertainty and evidence of concerns about competency, work-future, and a lack of control. Several people asked explicit questions of others seeking information about eligibility for medical certificates and ideas on how to cope better at work.
"I was wondering how other people out there cope with work on a day to day basis? I have been able to confide in one person at work about my situation, but sometimes it seems impossible to function 'normally' as I don't want the wrong people to find out for fear of discrimination. I feel I can't exactly call in sick due to depression - will a doctor give me a medical certificate? I feel that I am lucky to be able to function at a level where I can hold down a job, but so often it feels like a very precarious position. I would like to hear about other people's experiences and any thoughts you may have."
Some of the 23 had been unable to function in their jobs and had taken leave, resigned, or been encouraged to retire or fired. Of these, some returned to part-time work or found less interesting and satisfying jobs lacking prospects of promotion because it was all they could cope with, and reported the consequence of financial disadvantage.
Other difficulties coping with depression were apparent including agoraphobic tendencies, struggling with the demands of multiple roles, and particularly the overuse of alcohol as 'self-medication'. Also reported was the difficulty dealing with the aftermath of depression: "... Currently, I do not feel physically depressed, but struggle with the damage that my recent depressive episode has done to my life. Basically, I am trying to rebuild", which is non-specific but may refer to issues such as lost job opportunities and relationships.
Amongst the people who had sought professional help the theme of medication appeared to be a critical issue. An area of particular importance was the effectiveness of depression medication. A number of people (7) reported the experience of medication not working adequately, including an explicit question about the effectiveness of a particular type of medication. People reported being unable to find a medication that they felt was effective and expressed concern about the time it can take for people to find a medication that works for them. Even amongst the people who found antidepressants helpful, seven reported that the effect of the medication diminished over time and asked explicit questions of others about this.
"...Recently, I have been feeling worse than ever- is it possible to become "used" to a particular medication, say "toxic" to it, where it just does not seem to be having any impact anymore? ... Could someone offer me an opinion on this please?"
Even when medication was effective in reducing depression symptoms it was not always seen as being beneficial overall, with reported experiences as well as an explicit question indicating some participants felt medication had rendered them unable to experience emotions in a healthy way (i.e. they had ceased to be able to cry or feel joy).
Side-effects of medication were a very common problem, reported by 15 people. The majority had sought medical advice about these but not all were satisfied with the response; others appeared to have been trying to deal with the problems alone. Posts suggested there was a lot of uncertainty about medication and included explicit questions about how long side-effects might last, whether to take medication in the morning or at night, and how to judge whether medication was appropriate or not. Several people reported stopping taking medication because of the extent of side-effects. Such experiences meant that some people had turned to or were considering turning to alternative treatments. This led to direct questioning about alternative options.
"If SAM-e doesn't prove effective as an alternative med, I might try SJW. Did you have any side effects with SJW? I was concerned the dizziness would still occur for me with SJW since I heard it can have similar side effects to prescribed meds. What was your experience with this? It sounds like you're following the path I'd like to be on - lifestyle, diet, alternative therapies, etc. Can you share with me in greater detail what's working for you??"
Discontinuation from medication was also a source of problems for a number of people. Some reported difficulties with prolonged 'withdrawal' symptoms, and presumably in anticipation of such problems, one person explicitly asked others about how to effectively discontinue a particular medication.
Professional treatment and services
Reports of difficulties obtaining professional help were observed. Some of these arose from problems negotiating the mental health system such as restricted access to mental health services due to prior incidents with particular professionals and ineligibility to seek assistance from elsewhere.
"the problem is now they won't offer me any help at all. If I turn up to the hospital they are abusive and threatening and refuse to assess me. If I go anywhere else they say they can't see me because I don't live in their area... all I want is some help. ... I'm worried, I'm scared. And I don't know where to go for help. My family and psychiatrist are as stumped as I am. Any clues at all about what I can do? Any suggestions at all would be appreciated"
Lack of knowledge about the mental health system may also hinder access to professional help as was observed in an explicit question regarding self-admission to inpatient care.
Concerns about the unavailability of services were common. In some cases it was due to the lack of services in rural areas where it was necessary to travel substantial distances to see mental health professionals or wait long intervals between visits by professionals. The intervals between appointments were also reported as a problem for some who did not identify as being from a rural population. In other cases, 'unavailability' referred to the inadequacy of existing services:
"Resources for depressed people are often mentioned on related websites and in the blurbs put out by pharm companies. However reality tells a different story. A decent psychologist (psychotherapy) costs a fortune. A psychiatrist costs $150-$200 an hour. Lifeline is staffed by psychology students, some in first year and is not suitable for intelligent, educated, middle aged men. What we are left with is a gp who does not specialise in depression and often has no more knowledge about it then a lay person..."
In addition to restricted availability, the expense of obtaining help from mental health professionals was reported by seven people as being either a hindrance or an insurmountable barrier.
Reservations about the benefits of professional treatment were another common problem - and one which appeared to impede effective management of depression. Several people reported feeling doubtful that professional treatment was helping. Such doubts related to both specific practitioners and a lack of conviction regarding the medical profession or treatment in general.
For some people the focus of the problem was a lack of faith in the capabilities, knowledge, skills and understanding of professionals. The responses of seven people indicated the presence of such concerns, as well as the view that it could be difficult and time-consuming to locate a 'good' professional. There were also indications that attitudes and negative feelings towards professionals could inhibit help-seeking and treatment benefits. Feelings of fear, dislike and a lack of trust in professionals were reported by many people, and there was an explicit question regarding why distrust might exist. Of particular concern were the six reports of negative experiences with professionals which resulted in responses of confusion, anger and a sense of betrayal and subsequent help-seeking avoidance.
Participants' responses indicated they did not have a sufficient understanding of 'depression', particularly in relation to its cause and diagnostic issues. Also evident, however, were other needs related to appropriate help-seeking and recovery. People commonly reported having failed initially to recognise their condition as depression and thus deal with it appropriately. A number of participants reported being depressed for a long time before they were willing to accept they had depression. Others reported they had not realised or acknowledged that they needed help or were reluctant (due to pride or fear) to accept professional help or medication.
Some people expressed a strong desire (including an explicit question) to understand the causes of depression, stating they could not find the answers to this question and that adequate and appropriate resources did not exist.
"Why is our thinking faulty? ... I have to be careful, as I can suddenly slip into depression for no apparent reason and stay locked that way for weeks, Why?... I know I'm not the only one, we as a community of depressed people must all ask questions, Why us. We need answers and help."
Lack of understanding about the complexities of diagnostic issues was also observed.
There appeared to be substantial confusion about diagnostic thinking and terminology, especially regarding the diagnoses of unipolar and bipolar depression. Furthermore, a case of reported confusion about the meaning of test scores from a reputable depression information website suggested that using available resources to clarify diagnoses may be problematic in some cases.
People's posts suggested that the issue of diagnosis causes confusion. In some instances confusion and dissatisfaction had arisen from not being given a clear diagnosis, but there was also discernible confusion or disenchantment with being assigned firm but different diagnoses on different occasions. The desire for accurate diagnoses was reflected in an explicit question about the use of imaging to enable diagnosis, and another explicit question indicated that some people need greater clarification of diagnostic abbreviations and terminology.
The concept of recovery from depression was itself associated with difficulties (and with two explicit questions). Some people raised the issue of recovery as a means of eliciting a sense of hope from others that recovery is possible, and/or reported the tendency to self-blame for their failure to achieve it.
"Has anyone here ever recovered from PTSD or depression in general? I mean has anyone ever got to a point in their lives where anxiety, depression no longer lurks in their minds, subconscious or otherwise? I admit I'm asking out of hope... I just wanted to find out if anyone had made it to the other side. If there is a valley of roses at the other end, if there is a treatment that can perform miracles or at least help get me a step up on life, before it passes me by ... "
Disclosure and stigma
Problems regarding disclosure and stigma and not knowing how to resolve these issues were mentioned by many participants. Their comments indicated that disclosure about depression and the use of medication for depression was seen to bring with it the risk of negative responses. The posts of 15 people indicated they believed other people (in general, or specific sources including friends and family) did or might respond in a stigmatising manner to their condition. These beliefs appeared to be based primarily on past experiences of negative responses. However, some participants did not refer to specific incidents and some appeared to be reporting anticipated concerns.
Fear or experiences of stigma/discrimination in various settings were observed. Of these, fear of stigma in the workplace was the most apparent. Some people referred to a decrease in support over time in the workplace, disrespect or loss of respect by supervisors and co-workers, and the view that disclosure of depression may bring with it the risk of losing career opportunities or result in termination of employment. Overall, it was clear that people were reluctant to disclose their depression and confide in people in the workplace for fear of the consequences, and did not know how to handle disclosure or their work difficulties successfully.
"I'm very worried about the consequences if I tell them about my depression. I believe I was fired from my last job because of it. It's also destroying my confidence because I just feel so stupid all the time and it seems as if no one understands..."
Also reported was discrimination in medical settings that resulted in inadequate or unequal treatment (compared to physical illnesses).
Health professionals themselves were a source of negative responses, with seven people reporting anticipated or experienced negative responses from professionals, leading to fear, confusion and frustration. Some comments indicated that people's previous negative experiences had reduced their future willingness to seek help for their depression.
Self-stigmatising responses also caused substantial distress for a large number of people (seen in the posts of 18 people, including an explicit question). People reported blaming themselves for their condition, seeing it as a personal failing and responding with shame; and one person was angry at her/himself for 'needing' medication. Most often these responses referred solely to internal processes, although one person referred to 'embarrassment' in the presence of other people, and guilt was reported by several people.
"I wish I could stop being so hard on myself, but I blame myself for being this way and no matter what I do or say, that feeling won't stop.... I thought I was stronger than this, but obviously I am not. ... I know that there is a lot of love for me but I don't deserve it... I feel as though I am bringing everyone around me down and that is making me feel worse."
In some cases people recognised that their self criticism was not justified or fair but could not overcome their negative self-responses.
Regardless of the source of stigma it is clear that people felt the need to hide depression, and that this may have become a burden in itself. Seven people referred to 'masking' depression, the demands it made on them and not knowing how to handle them.
"The pain and the sorrow I have to hold in Behind my mask I must hide My feelings I cannot show to the real world... I am hiding again but it's torturing me ... What do I do?"
Except in the above quote, people were not explicit in their need for information about how to deal with stigma. Nonetheless, the extent of reported problems is indicative of a substantial information gap.
Comorbid health problems
In addition to depression many people reported the existence of other mental health diagnoses or problems. The predominant comorbid mental health problems were anxiety (28 cases) and substance abuse (9 cases). Other diagnoses included Bipolar Disorder, Post Traumatic Stress Disorder, Schizoaffective Disorder, Borderline Personality Disorder, Obsessive Compulsive Disorder, Dissociative Identity Disorder and eating disorder. Many people reported multiple mental illness diagnoses and their struggles dealing with elements of or the combined burden of their disorders.
"...I have been diagnosed with Major Clinical Depression... also, I have psychosis NOS... Other things have happened to me, which have caused me to develop dissociative identity disorder (DID) and complex post traumatic stress disorder (PTSD). This 'trauma' is not something I can remember and probably not something one discusses...The memories are locked away ... I have been hospitalised a few times."
It is clear that many people with depression also need information about other health issues they might be experiencing.