30 Day Chronic Illness Challenge: Day 21 & 22

How ‘out’ are you about your illness to friends and colleagues and how has it affected your work?

Obviously I am very open about it. I mean, I have a public blog about it and I share all posts on my blog’s Facebook page. Also, all my friends know. I feel it is important in order for them to understand my behaviour and to support me. If they judge me, then they were never really worth being friends with. I’ve had much resistance though and it wasn’t all as easy. I remember with one of my best friends I started studying medicine with, we went through quite a bad patch when we were in 4th year and I had to discontinue my year due to Anorexia and Depression. She grew up with a family that has a view of “Pull yourself together, everyone goes through good and bad times.” So she never had to really deal with anything like this before and didn’t understand me at all. I was the sickest I had ever been back then; I starved myself, had the worst hell of depression I ever faced and was on no medication whatsoever because I struggled to be put on things that worked, I self-harmed, I overdosed on benzodiazepines which disinhibited me entirely and I’d end up full of cuts on my body and a bruise on my head but have no memory of it. I tried to overdose twice in an attempt to die but the thing with new psychiatric meds is they’re very unlikely to kill you on overdose. So I would just wake up feeling like utter shit after 3 or so days. I had this terrible sense of constant emotional pain that would smother me every second. I laid in bed all day and ignored my phone. I tried hard to do all I should like see my therapist, get admitted, try 20 medications, live healthily and meet up with friends but I had no energy or will to speak much when I met up with them. So as I said, I was sicker than ever. I remember one day my friend and I went to the park and had a picnic and I asked her whether she thinks I could ever get better and if I could ever be okay again. Her answer was, “I honestly don’t know. I hope they can help you.” What I needed to hear was that she still believed in me yet, she had given up on me too and she was all who I really had. For a while she disappeared out of the picture because we fought about my mental health issues. Surprisingly, after finding my new Doctor and the right meds, I got better. I went back to University, I was doing well and I was happy even though I missed her. She contacted me later through the year and said she had read my blog and that she was so sorry that she didn’t stay because she just didn’t understand. She cried. After that she never hesitated to help me and for that I am so very thankful because we grew a lot from it and only got closer. So telling people is one thing but having them be in your life and see how truly bad it really is, that is an entire new ballgame. 

When it comes to colleagues, I am much more discrete about it. I do tell them if there is a need to and yes, there has been a few such times. Because I study Medicine, I have to go through quite a process with the Dean of our faculty. I had to meet up with him and tell him what was going on. Of course he was very supportive because I’m not the first med student who has had severe depressive issues and had to take time out. But they need to know you’re capable of fulfiilling your duties as you deal with patients. So my Psychiatrist had to write a letter stating my problems and need for admission, I then got a letter from the Dean with a bunch of conditions stipulated and that included continuous reports from my Psychiatrist and proof that I continued seeing her every 3 months minimum. Also a notice that my marks and progress will be monitored and if I have insufficient attendance then my studies may be decided to be terminated. It sounds more strict than it is though. I’ve had 3 admissions during my studies and because the Dean knows about my case so well he would never prevent me from continuing as long as I’m healthy according to my Psychiatrist. With regards to the people in my group whom I work with, about 4 of them know what I’m admitted for and 2 of them know more about the history behind it. The other people don’t know. One gets judged easily in Medicine and your competence gets doubted. Also, I have to work with these people and so, I don’t need them to disregard me. What I go through and all the details are really none of their business.


Do you think there are any commonalities, overdiagnosis, misdiagnosis or stereotypes with regards to your illness? What do you think about your diagnosis in general?

I think there are definitely many commonalities between the different disorders. Major Depressive Disorder and the depressive symptoms found in Bipolar 1 and 2 are very much similar whereas in Bipolar 2 the difference is that mania is more predominant than depressive symptoms. Both however experience severe depression. Also, Bipolar 2 is said to have hypomania which is a more mild form of type 1’s mania. Then there’s Generalised Anxiety Disorder and although the disorder itself means you experience it almost every day and it interferes with your day to day life, anxiety is also a frequent symptom of many other Psychiatric disorders. I think many people get diagnosed with GAD but they, in fact, don’t fully have the disorder itself and anxiety has more to do with their other diagnosis. Any disorder can have any feature really. Take psychosis where you have hallucinations and delusions – those can appear in any illness but that doesn’t mean you have a full blown psychotic disorder or Schizophrenia. They generally would say you have, for example, bipolar with psychotic features. So what essentially diagnosis you in a category is the predominant symptoms of a condition which you fulfill an adequate number of. But in general, many conditions have many symptoms in common. Because of that, I think there is way too often an overdiagnosis and misdiagnosis. Especially with Bipolar and Major Depressive Disorder it can be very easy to misdiagnose and miss Bipolar. 

Take for instance, my case. I was diagnosed with MDD and so since my initial Doctors put me in that box they had to follow that protocol of treatment which mainly just involves your antidepressants. One Doctor even showed me the hierarchy in her textbook of the order of antidepressants to try and we tried them all… But because I was only put on antidepressants and they never thought of giving me a mood stabiliser, which they give in Bipolar, I didn’t get better. I was severely depressed, yes, but I did have very erratic moods as well and it wasn’t until the mood stabilisers were started that I got so much better and my depression went into remmission. So because of that and my erratic moods, the Doctor I am with now had to classify me as Bipolar type 2, otherwise the medical aid won’t pay for mood stabilisers. Whether I actually have Bipolar 2 is uncertain. In type 2, depressive symptoms are more intense and predominate over manic symptoms and the mania you find in type 1 is only hypomania in type 2. Whether I am hypomanic is also not fully certain because mania isn’t just excessive exuberance, hyperactivity, spending sprees, flight of ideas , thoughts and speech and feeling like you can conquer the world. Mania can also be irritability and impulsivity which are often overlooked. I have very severe impulsivity at times and also irritability and there have been periods where I am very talkative and outgoing but besides from the impulsivity, it’s hard to say whether the other behaviours I displayed were relevant. It can be a very gray area and all we know is I respond very well to mood stabilisers and when we try to wean me off them, I severely relapse. 

There are also your personality disorders – narcissistic personality disorder, borderline personality disorder, dissociative identity disorder, antisocial, histrionic, avoidant, dependent, paranoid and schizoid personality disorders… These especially I think are even more uncertain than any other psychiatric conditions. Sure, some people very clearly fall into one of those disorders and are textbook cases, but many people only have several traits of that disorder, yet not enough to meet the adequate criteria to make a diagnosis. Every single person on this planet, mentally healthy or ill, have personality traits that fall in some of these categories, but they don’t all have personality disorders. We all have features of some or other aberrant personality because we are flawed humans. It has been said to me, in my last admission that I have Borderline Personality Disorder. You need to meet 5 out of 9 criteria to be diagnosed. I meet 4 – 5 and I was, again, put into a box, but the criteria also seem very much to overlap with other illnesses. 

The criteria for BPD is:

1) Frantic efforts to avoid real or imagined abandonment.

2) A pattern of unstable intense interpersonal relationships alternating between extremes of idealisation and devaluation.

3) Identity disturbance: Markedly and persistently unstable self-image or sense of self. (Many mentally healthy people have this problem)

4) Impulsivity in spending, sex, substance abuse, reckless driving or binge eating. (Also fits in with Bipolar symptoms and just many people’s abnormal coping mechanisms)

5) Recurrent suicidal behaviour. (Obviously fits in with depression, bipolar and many others.)

6) Affective instability due to marked reactivity of mood (e.g. intense episodic dysphoria, irritabilty or anxiety lasting a few hours and only rarely more than a few days.)  (Irritability and anxiety is very non-specific and again, can fit in with your mood disorders.)

7) Chronic feelings of emptiness. ( Fits in with depression and the general ailments of the human condition…)

8) Inappropriate, intense anger or difficulty controlling anger.

9) Transient, stress-related paranoid ideation or severe dissociative symptoms.

According to a 344 question personality assessment questionnaire I was made to fill in during my last admission, my definite criteria I fit in with is 3, 5, 6, 7 and possibly 1. What made me uncomfortable is that I was so boxed into a disorder because of those suggestive behaviours I had, where many may really just fit in with depression or are just too non-specific. 

Stereotypes as well, which builds on what I’ve said above; when you say bipolar, people immediately see mania. When you say depression, people see sad. When you say Schizophrenia, people see psychotic. It’s very easy for people to glue one single word to a disorder and define us entirely by it, meanwhile, there’s so much variation going on behind it all. 

What I think is important is that we stop boxing ourselves into labels and assume we have all the problems within a diagnosis and we all require the exact same treatment. In general, treatment in any medical condition is based on symptoms and the symptoms are targeted. One needs to think very logically about your approach to treatment. If you have issues that are suggestive of a personality disorder I don’t think it really matters to add another set in stone diagnosis to your list when it might be incorrect and it just makes you feel all the more f***ed up. The point remains that you have to address each one of those behaviours individually in therapy if they are interfering with your functioning. 

Chronic Illness Challenge – Day 17 & 18

How do you feel about the future? Is your life limited in any sense?

To be honest, I am somewhat afraid of a future with my mental illness. 4 years ago, I would’ve thought I would forever be going on as I did by taking just that one antidepressant and it would be no big deal. Fast forward to now… So many new symptoms developed and with the relapses I got much worse every time. I went from ‘just depression’ to severe depression and anxiety, an eating disorder, borderline personality disorder and more suicide attempts to the point of taking a cocktail of meds. It’s scary to see that you’ve just gotten worse over the years and you need to take more and more precautions to stay healthy, and so, you wonder… How will I be ten years from now? Will I kill myself eventually in one moment of utter, reckless hopelessness? If I somehow manage to get ahead and stay as I am now on the same meds (which I believe I will,) will I ever be accepted and willing to have a romantic relationship? Have children? Because I wonder, what if I decide to have children and they inherit my genes giving them a predisposition to depression. There are many scary possibilities that could happen when you live in such a vulnerable state. So I wouldn’t know what the future looks like. But one also has to be realistic and look at the context of your illness. I got worse for reasons being medication discontinuation, severe prolonged stress with med school and my mom’s death, my anxiety getting out of control making me starve myself and live immensely underweight for 2 years and all these events would’ve obviously had a negative effect on anyone’s mental health if they already had depression in the first place and resulted in further deterioration. Right now, life is not the same. I have learned incredibly much in the management and ability to survive through trial and error and all that happened. I no longer have such incredible anxiety which means I cope with stress much better. I am also on the right combo of medication which has made the world’s difference and it took time for that. I am done with studying Medicine in 8 months and even though it is the toughest part of it, all uphill right now, I’ve come so far that it’s almost certain I will complete it and have a clear career direction fall in place. I have dealt with much trauma that happened over the past 15 years and emotionally and mentally in therapy and I am no longer so profoundly affected by it. Lastly, I also take way better care of my physical health. So basically, I don’t have the same risk factors I had. The future will without doubt have its downs, I am sure. I’m not always going to be one amazing, budding and blooming rose garden. I live with depression which is chronic and which may have its hills and valleys. I know there will be times the monster shows its head, but I have learned more how to control that monster which means my future isn’t dependent on it at all. I have been told by my Doctor of patients who were just as sick as I was, who eventually after 5 years of weaning off meds got off them and was still doing great. So the point is, it’s not a death sentence. I will always be more vulnerable but I am still very much capable. So no, my life isn’t limited in any sense. 

Have you met anyone with mental illness? Did it help?

Yes, many! During my admissions to hospital over the years I’ve met quite a few. Since you’re placed in a room with other people it’s kind of hard to not start talking to each other. The thing that I’ve realised about them all is their own unique strength. They each had such a story of how they got to where they were and where they wanted to go in life and even though they were all just as sick, they still held onto hope and of course that inspired me. I am still in contact with a few of them and none of their lives suddenly got easy. Some had relapses again and some struggled so much with medication. Some are mothers and some were just starting out in life. What I love is how we stay in contact and still check in on each other from time to time and never stop caring. Others I have met online and I am just as inspired by them and how they kept going in their battle. I remember one specific woman about my age from Hungary who had started reading my previous blog and emailed me. I think our emails to and fro were an outlet and source of support for both of us and we got to know each other more and became friends. There are also a few others I have met through blogging who shared their stories or just started showing me so much support and still do. Also, reading blogs of other people who also deal with mental illness and seeing how they’ve progressed and following their posts of self-expression, motivation or how they cope has also been of great comfort. I think what makes us sufferers feel so close is that understanding of an unfathomable pain we share and the ability to be completely open when we talk, knowing we won’t be judged and we can let our guard down. I have felt much less alone since I got to know so many such people. 


Sidenote:

The heart project to promote mental illness awareness commenced today. If you have no idea what I’m talking about, it’s all at the end of yesterday’s post. So, I joined in and drew my hearts today. 

And then my dog joined in too…

Chronic Illness Challenge: Day 3 & 4

How have your friends and family reacted to this and how did you get a diagnosis?

The diagnosis was one clinically made by a Psychiatrist after my mom decided to take me to one at age 15. I had stopped speaking at all at school and was constantly crying and for the first time, self-harmed. I don’t remember much about the first appointments but I was asked a series of questions regarding my mood, behaviour, sleeping patterns, interest in daily activities, thought pattern and any suicidal ideation. I pretty much at that time filled all the criteria in the DSM (Diagnostic and Statistics Manual) for major depressive disorder. In general, how it works now is the same. Diagnoses are made clinically, which can be problematic as one’s symptoms may fall into other conditions too, and later on in life other symptoms may manifest. I think what matters most is to not be put into a box. One need not be defined by a specific illness because you meet a specific set of criteria. What I think matters most is symptomatic management and unfortunately, that takes trial and error on medications. We all react differently. There’s no blood test or scan one can do to make a definitive diagnosis as in other diseases because mental illness is such a complex illness that involves many neurological events science still cannot fully piece together. There are newer developments like MRI scans that have shown strong evidence in structural abnormalities in the brain but it isn’t a standard procedure performed in diagnosis and also, these aren’t necessarily permanent structural changes. Medications have been shown to build new neurons and shrinking of the hippocampus reverses over time. There has been much development in understanding but specific targeted therapy is yet to be reached.

My friends and family didn’t react very positively initially as they had no understanding of it. Mainly, one gets told to build on your character yet it isn’t a character flaw we have. My mom was incredibly supportive although she didn’t understand and felt helpless, she loved me back to life in a sense by helping me with things that felt like mountains to me. She helped me resume daily life. I would lay in bed all day and cry and she’d take me by the hand and force me to go for a walk around the block with her or ordered my dad to take me out for cake. She took me to each of my psychologist appointments and was patient with me. The problem was, she expected a permanent fix and wanted it to be a once off event and when it wasn’t, she started reacting with disappointment and left me more to myself. The second time it happened it was to be kept quiet from people as I had to take time off from school, and so, instead, she told them I had a brain tumour, which was a coincidental finding and a benign lesion more likely from physical trauma at some point in my life, like falling when I was a baby, and had nothing to do with my depression. My dad wasn’t emotionally supportive and still isn’t. He had the view of, “suck it up.” You need to be more tough and just pull yourself together. Right now, I am on my own. I don’t have any family support with regards to my mental illness and it isn’t ever talked about. I schedule my own appointments, drive myself to and from hospital and take medications they know nothing about. I may lie in bed and cry and my dad would walk right past me as if not even acknowledging me. I cannot tell you how much more difficult it has made battling through this. Family support is such an incredibly important and necessary thing one needs in mental illness. 

As for my friends, I have 3 close friends, 2 of which I grew up with. They never judged me or told me to be stronger or blamed me in any way. As one of them told me, she may not ever understand it but she’ll never love me any less or turn me away. She hasn’t. When I am admitted, they come to visit and check in on me from time to time. The 3rd friend I met in 1st year of medicine and she knows everything about the hell I’ve been through. There have been times she literally picked me up from the floor. We had times where we fought as she would get frustrated because she too, didn’t understand why it just wouldn’t go away and why I didn’t do more. Later on, she learned much more about it and has always been there. I am thankful for the support and acceptance and patience from them. We hardly ever see each other nowadays but whenever I fall, they never run away. 

As for more distant friends at university, it has been much harder. Outsiders tend to have a very limited view of what you’re going through and so, it’s easy to make assumptions. I’ve had many things said to me that just showed this stigma. When I got admitted one guy asked me if it was because of a boyfriend leaving me. Little did he know the boyfriend left me after admission because of my illness which he “emotionally couldn’t cope with.” I’ve also had people “Bible bash” me with claims of the effects of “generational sins” being responsible and that they would rather not visit me at home because of influences from a spiritual realm. I’ve been told it is a flaw in my character and that I simply need to change my attitude. It’s incredibly easy for people who have had no exposure to the concept and effects of mental illness to make assumptions and say stupid things they don’t realise is hurtful to you. But luckily, it hasn’t affected me much because I know the truth and struggles and causes of this. I easily brush it off because a limited perception is to blame. What matters most to me, are the people in my inner circle in life.