When building relationships and coexisting with fellow humans in life – there is conflict, disagreement, and a divide between how you perceive yourself and how others perceive you. In this week’s Health Activist Tweetchat let’s focus on the latter.
We often find ourselves having to speak out about what is true about ourselves, our health, and the communities we advocate for. This is because there is a lack of awareness, understanding, or compassion amongst the general public. Have you ever been told that “At least you don’t have [___ condition]” or that “You’re lucky you’ve got a good disease”? Have you ever been judged for seeking certain treatments or advocating for a certain cause? What about facing stigma for misperceived causes for your symptoms? Have you ever been blamed or felt another condition was blamed because of incorrect information or myths?
Health Activists from all different health communities have told us: people who don’t understand often judge. If the public thinks you’ve made “bad” choices and chooses to link those to your health – there can be some seriously painful judgement to deal with. No one would choose to live with a taxing chronic condition or life-threatening illness – and yet, because of myths, stereotypes, and lies – fellow patients are judged for their health. (Two examples are: people who have Type 2 Diabetes brought it on themselves (false) or that people living with lung cancer brought their disease upon themselves by smoking (false! Many people with lung cancer never smoked).) If you don’t fit into the perceived ideal (which is often fabricated and exaggerated) – you’re invisible or “wrong.”
Even worse than that? That there is an implication that patients somehow “deserve” what they deal with. That there is some fantastical, cruel karma that doles punishment and comeuppance for people’s past behaviors or beliefs. It’s simply not true. There are plenty of exceptions to each of these causation “rules” – and so many disease go without known causes or even what may increase risk factors. Just as there are no guaranteed “cures” – there is no catch-all explanation for why someone lives with a certain condition or symptoms. It’s always a complex combination of genetics and environment. Every person is different and every situation or experience is, too.
And yet – even though each one of us is unique, we all struggle, and we all deal with insecurity and personal pain — the way we, and fellow patients, are treated is not always with compassion or understanding. We’ve got work to do as Health Activists to keep unmasking the truth and correcting falsehoods.
Join today’s #HAchat to discuss all of these topics and more. If you’ve ever been judged for your appearance, your health, or some qualities about yourself — or know people that have — let’s discuss that today. Let’s delve into what is going on and how we can help.
We’ll be tweeting here: http://tweetchat.com/room/HAchat at 3pm ET and hope to see you there!
When tough stuff arises in life – we are inclined to analyze it and try to make sense of the chaos. Almost instinctively, we wonder, “why is this happening to me?” And, often, the answer isn’t what we want it to be. But that doesn’t mean we can’t rewrite the answer over time. It takes a lot of healing, rewiring, and acceptance. This moving post by Courtney explains how she rewrote aspects to her story – just by rephrasing her experiences and reinterpreting events. Just by trying to look at things in a different way – we can change the way we see ourselves and the course of our lives. It’s not easy – and it takes time. But it’s possible. Thanks for sharing this with us, Courtney. –Amanda
Why Me: Disease vs. Recovery
by Courtney Rundell, BeePea
Why (have all these bad things happened to) me?
1. I was an abused child.
My father was a violent sociopath alcoholic. He took my mother and I away from everyone we loved and moved us to the middle of Mexico, where we lived outside of a small fishing village. We rarely had visitors, so no one could see what was happening behind our walls.
I lived in constant fear and learned how to survive. I disassociated. I found ways to become numb.
2. I became an alcoholic.
I swore I’d never be an alcoholic like my dad. He drank from the second he woke up until he passed out everyday. His drinking was our problem. He was an alcoholic.
And then there I was, 24 and unable to stop drinking.
I was genetically predisposed and it was his fault. Alcohol was the only thing that brought me peace in my world and now that was being taken away, too.
It’s not fair that I have to do all this work just to not drink on a daily basis, when other people can have some beers and be fine. I can never drink again. People look at me like I’m a weirdo when I tell them I don’t drink. I’m damaged.
3. I went to a mental hospital.
I cried for 5 months, made a plan to kill myself and then was placed on a 72 hour hold. I was 7 years sober. Life was supposed to get better after I stopped drinking, not worse. My marriage fell apart. My life fell apart. I had to start over – again.
When I came back, people said that I wasn’t sober because I took psychiatric medications. The 12 step meetings that gave me peace were no longer safe. The people who saved me from my alcoholism judged me for my mental illness. I felt alone and misunderstood.
4. I have bipolar 1 disorder and PTSD.
PTSD was another gift from my childhood. Bipolar came from my mother’s side; alcoholism from my father’s.
I managed to get the worst genes from each of my parents. And they weren’t great in the first place.
5. I had postpartum psychosis.
I finally made the decision to have a baby after reversing the brainwashing of my childhood (I was systematically trained to never want children) and then I didn’t even get to enjoy it. I did everything right – my psychiatrist and therapist were with me every step of the way – and I still lost my sanity.
It scares me how fragile my sanity is and how hormones can absolutely throw me over the edge. The road back has been far too long. Maybe I’ll never be stable again or I’ll stabilize just in time for menopause.
Being a woman feels like another illness.
6. I’ve lost friends and family because of all of the above.
At 7 months pregnant, my sister disowned me and two of my three closest friends turned on me. I crashed my car and had a hard time getting rides to my 12 step meetings, after I’d been of service to so many of those women for years. I finally got brave enough to ask for help and I was denied.
And these are only the top six. I’ve also been raped, molested and bullied. I’ve attempted suicide. I had a very sad miscarriage. I’ve watched people I love die and people I despise thrive.
These things have set me back time and time again. I’ve been given an unfair set of circumstances. Somedays I just want to give up and give in to the crushing weight of my life.
Why (were these opportunities for growth given to) me?
1. I was an abused child.
I been given the opportunity to break the chain of family violence. I am a mother and I’m raising my son with a loving husband in a non-violent home. Domestic violence is cyclical. I have enough humility to know that my instincts can be way off base, so I do the work to be the best mother and wife I can be.
There are three rules in my house: no hitting, no yelling, no name-calling. Today, my home is a safe place. My home is a refuge. My home is filled with love.
By living the life I do today, I’ve been able to help many young women accept and move on from their dark pasts. Ends up I wasn’t the only kid growing up in the chaos and confusion of abuse. I’m not alone and what was once a liability has become one of my greatest assets.
2. I am a recovering alcoholic.
I’ve been sober for 14 years. Drinking brought me to my knees and gave me the desperation to admit that my way of living wasn’t working. I was led to the 12 steps, a fellowship and most importantly a God of my own understanding to turn to in times of trouble.
When brought to our knees, why not pray? I was down there anyway…
And I’ve been given the gift of being able to help so many people with only my experience. No degrees, no resume, no ego needed – just my story.
I can go to a bar right now. I choose not to drink on a daily basis. I have choices today because I am sober and no longer a slave to alcohol.
Drinking is not my solution today and I get to do the work to not only stay abstinent, but live a happy, healthy life.
3. I was hospitalized because I had a plan to kill myself.
Mental illness brought me to my knees as well. In that hospital, I finally got the correct diagnosis. I was misdiagnosed with anxiety disorder more than once and I felt hopeless when the therapy and medication didn’t work. My illnesses are progressive in nature, so as they worsened, I feared that life would only get worse and worse until I could no longer bear the pain.
When the student is ready, the teacher will appear and that’s exactly what happened. I was led to the therapist and psychiatrist who have been on this path with me for 7 years now. I have a safety net of qualified doctors who I trust and can call anytime, anywhere. I have a solution to my problem today.
Being hospitalized is a humbling reminder of where I can end up again if I stop treatment.
There are still people who believe I’m not sober because of my meds, but they don’t stop me from going to meetings and speaking my truth. I’ve become a voice for people with co-occurring disorders and am working on a survival guide and a YouTube series. I can choose to be a victim or make the change I want to see.
I know my truth today so ignorance doesn’t affect me the way it did in the past, not that it doesn’t sting sometimes, but my truth is deeply rooted within me and therefore unwavering.
4. I have bipolar 1 disorder and PTSD.
I had to know the problem before I could be led to the solution. The work I have to do to live actually sets me free. The medication I take gives me a safety net to do the work.
The soul-searching wasn’t and isn’t easy, but living in my disease was far more difficult. I continue to learn how to live and thrive with mental illness and alcoholism. By lifting myself up, I get to help many others get back on their feet as well.
5. I had postpartum psychosis.
I outed myself on Facebook during a psychotic break, which led to my first blog post about mental illness. In less than a year, I’ve become an active voice in my community and continue to heal and help others.
I learn on a daily basis how to put myself first and care for my son. I remind myself of the oxygen mask theory, so much so that it’s become a mantra. I must take care of myself first so I can take care of my child.
I’ve also stopped comparing myself to other moms and hanging out with moms who are caught up in perfectionism.
My son is in full-time daycare. I let my husband do a lot of the work. Our son is truly co-parented. It takes a village and I love my village.
And menopause? I’ve met some amazing people on this journey who research mental illness and hormones. I have resources today and am learning about how best to handle menopause when it happens. By the time it hits, I’ll be armed and ready!
6. People judge me & they’ll keep on judging me!
What others think of me is none of my business so I stay out of it.
I found out who my true friends were once my mental health started to deteriorate a few weeks into my pregnancy. If my fair-weather friends didn’t show me their true colors, I wouldn’t have stepped out of my comfort zone and sought new, healthier relationships. My life is full of beautiful supportive people today and I couldn’t be more grateful.
See, “bad” is a perception. When I label something as “bad” or “good” I’m placing a judgement on it. Some of the most painful events of my life have ended up bringing me joy and freedom I never knew possible.
When I’m in it, I can’t see it. I’ve been foolish in this manner several times because I have to process, grieve and feel the feelings or I’ll never be free of them. That’s what I did when I drank – I numbed it out – I made the problem go away. Then in sobriety, I made the problem go away with too much solution!
In the big, huge picture, it all makes sense to me, but I live in the real world and get caught between the disease and recovery more often than I’d care to admit.
I’d be lying if I told you that I walk around in a constant state of gratitude.
Through daily prayer and meditation, I’m able to clear away the disease that stands in the way if me and my higher self. But it’s all a choice – do I choose to be a victim or a work-in-progress?
So instead of asking “why me,” why not ask “why not me?”
Because the final question I ask myself is always “how free do I want to be?”
And the answer is always “as much as humanly possible, thank you very much!”
Courtney Rundell – Freelance Blogger for WebMD, International Bipolar Foundation and the North Hollywood Patch. Thriving. Growing. Blooming. Bipolar. On Twitter @courtneyrundell and blogging at BeePea.com.
We have another Tough Stuff topic to discuss this week – that is relevant to both the patient community and individuals with significant online footprints. We’ll be discussing planning for end of life.
Now, for the most part – we don’t discuss EOL or death. We’re more focused on living well and making the most of each day. And that’s ok. Life is complicated enough with balancing life as a patient, friend, family member, parent, employee, and online health leader. You’ve got a lot going on – and stopping to think about the big “what ifs” can be scary and even counterproductive at times.
But, in light of Tough Stuff Month – and our roles as Health Activists – let’s go there this week. For the sake of conversation let’s delve into those topics we may have considered briefly or even dealt with personally. This week’s #HAchat panel will go into topics like:
- Do you discuss End of Life in your health community?
- If something happened to you – what would you do with your blog, online presences, and social profiles?
- Do you have a living will? If yes – what advice do you have for others in creating one?
- After some people pass on – their social profiles are used as memorial sites. Is that something you support? Why or why not?
- Do you have a plan for your passwords, log-ins, or other information – just in case?
- Would you consider telling your community if something took a turn for the worst with your health?
- What aspects of EOL care can translate online? What cannot?
We hope you’ll join us in this open discussion about End of Life planning. No matter what health community you lead – EOL is something we could all face, suddenly, without warning. We don’t have to dwell on the existential fear and pain of death – but let’s have a conversation about it just to see what we can learn from each other.
Join us at 3pm ET tomorrow – Tuesday, October 23rd. We’ll be tweeting here http://tweetchat.com/room/HAchat#
In this post, Health Activist Jane Waterman chronicles her experiences with the depths of depression and living with invisible illness while pursuing ambitious career dreams. Her struggles are difficult to read but relatable to those who have lived with unresolved symptoms and painful side-effects. Though her journey was not easy, it is a testament to the process of healing and the work that goes into maintaining hope and finding solace. Thanks Jane, for bravely sharing your story with us. –Amanda
My Beautiful Career
By Jane Waterman
[Trigger Warnings: depression, self-injury, suicidal ideation]
I was not yet out of undergraduate school when I was visited by the first of many invisible illnesses. An introverted and isolated girl, I completed my honours degree in Physics in 1988. With a dream of becoming an astrophysicist, a PhD was the next logical step. However, beset by major depression, I knew I wasn’t ready for the challenge. It was time to enter the “real world”.
In 1990, I was training to be a meteorologist, a side-step from my envisioned beautiful career, and newly married to my first boyfriend. At a mid-year celebration, I contracted food poisoning and spent the rest of the year wracked by nausea and abdominal pain. After the requisite diagnostic tests deemed my health “normal”, the GP sent me to the psychiatrist.
I finished the training, but was unable to work due to my physical and mental distress. In 1991, two young men I knew committed suicide within months: one had chronic fatigue syndrome; the other, depression. My decline started in earnest. I began years of drug treatments for depression (my physical maladies were dismissed as something I’d have to learn to live with). In hindsight, the regimens of increasing dosages, switches, and combinations of psychiatric medications led to side effects that exacerbated my illnesses.
Even though I secured a dream job as a support scientist in 1992, I felt broken, and isolated myself from family and friends. Over the next couple of years I survived a drug overdose, had brief hospitalizations and was dismissed for more drug therapy. My new marriage fell apart. I felt consumed by inner rage. Whenever it leaked out I controlled it by directing it at myself. I began to scratch my arm with a blade. I didn’t know what self-harm was. All I knew was the feeling of immediate relief from the pain locked in my brain and body. It was the only way to ease the tempest: ironically, to help me pass as “normal”.
In 1994, an online friend introduced me to cognitive therapy and a good therapist in town. My new psychologist talked to me. He gave me the tools to return from the edge of madness. Through years of intense loneliness, and chronic fatigue from my undiagnosed physical illness, I felt someone believed me enough to want healing for me.
I loved my job in computer modelling, but despite my achievements I was plagued by worthlessness. Lacking self-trust, I checked my work for mistakes repeatedly, likely due to an undiagnosed obsessive-compulsive disorder. In bad flares of brain fog, my self-mistrust grew. The checking became paralyzing. It was difficult to finish things, and I kept checking things that were finished. I started getting passed over for promotions.
Emotionally, I felt raw around people at work – there were few others in my life. Some manipulated and exploited my illnesses. As someone who’d always had trouble expressing emotions, sometimes I’d take unscheduled breaks and go for walks, just to cry where no one could see me.
I spent more time at the local clinic and found a few locums sympathetic to my distress. One offered to write me a note for 2 weeks’ stress leave. Although I never took her up on it (workaholism being an ingrained family trait), I felt such gratitude to have been seen.
In 1997, I developed a relationship with a beautiful soul in Canada. I investigated transplanting my career and was accepted for a PhD in 1999. Through my marriage, I also became a parent to two teen girls. With the love of my new family, I hoped I could navigate graduate school at last.
After changing countries and leaving friends, grad school was exciting and terrifying. In my first semester, a bully on faculty seemed to delight in giving me failing grades, and then after more hours of work, giving me the grades I deserved. Grad school fed into all my fears of imperfection. My compulsive checking worsened, and my supervisor would at turns praise me highly and then question my lack of progress.
After researching my symptoms, I suspected I had lupus and asked to see a rheumatologist. In June 2002, he diagnosed me with Sjogren’s syndrome and started me on Plaquenil. What should have helped me merely led to more side-effects. I became suicidal. The self-harm that had been mostly controlled, re-emerged. I compensated by indulging my OCD tendencies and cleaned our home for hours each day, often at the expense of my school work.
I had a name for my illness, 12 years after it emerged, but after years of trying alternatives to Plaquenil, I found none that were effective or I could tolerate. By 2005, wracked with doubts and exhausted, I left my beautiful career on disability. I knew the stress of applying for disability benefits would finish me.
Over the years, I’ve done a lot of healing work, but skirted the roots of my illnesses. I found an amazing counsellor in 2010, who taught me about metta (loving-kindness), and mindfulness-based techniques. I began to receive the messages my wife had given me for years: that I was lovable and could love myself. It takes time to erase old tapes, but I’m giving myself that time.
Now, in 2012, I’ve begun my next beautiful career: writing and advocacy. Although I still have difficulty facing the world, I’ve found power in words. I now believe it’s not only okay to talk about it, it’s important to let others, including my younger self, know the compassion of sharing: of being heard and believed.
Even with exhaustion and pain, I’m grateful to have times like this when I can sit and share my message. You’ll make it. You’ll find things you are passionate about. You’ll make mistakes. You can forgive yourself and go on. There are beautiful things on the other side, and even if you end up where you didn’t think you’d be, you’re in exactly the right place.
Jane is a blogger, artist and advocate at Blackbird at Night (http://blackbirdatnight.com). Jane grew up in Australia, before joining the love of her life in Canada in 1999. At 46, Jane has lived through and with many challenges including depression, dissociation, Sjogren’s syndrome, endometriosis and PCOS. These challenges have necessitated several reinventions. When not eking out her time and energy as a freelance technical writer, Jane chips away at her dreams of being a “real” writer of novels and inspirational self-help books.
It’s that time again: the last burst of advocacy before we start a whole new year of Health Activism. That’s why we are doing National Health Blog Post Month (#NHBPM) this November. We love to encourage the health bloggers among us because, while a lot of people have blogs – it’s pretty special that you dedicate yours to raising awareness and helping others.
So join us in posting every day in November! But don’t worry – we have dozens of prompts to get you going. All you have to do is what you do best: write creatively about health.
This year we will be featuring a health blog a day here on the WEGO Health blog to highlight all of the folks participating and show the range of health blogs and the bloggers who write them. Want to have your blog featured? Just check the box on the sign up page and give us a quote about why you blog or what makes your blog special.
We will start of Day 1 on Thursday, November 1st – so be sure to sign up early to get the prompts now and start planning, if that’s your style. We love when everyone involved writes about the same thing but we also wanted to give lots of options so this years prompts are divided into two prompts a day. Choose the first option OR the second option and start writing. We’ve also included bonus prompts that you can use throughout the month or save for later. Of course, feel free to use the prompts as suggestions and make this NHBPM your own.
Once you sign up, head over to the NHBPM Facebook Event to RSVP and tell the group a bit about yourself: your blogs name, what condition or health area you focus on, and a URL. The group will be the HQ for NHBPM all month long. So feel free to post a link to your newest post every day and interact with other participants by reading their posts and leaving comments. As bloggers we love comments so let’s a foster a mini NHBPM community there.
The only thing left to say is: have fun! You have two Get Out Of Post free days so you can use those if you need. Once you complete the challenge you’ll get a NBBPM blog badge and pride in the awesome accomplishment of having blogged every day for a month.
We looks forward to your posts!
Sign up for National Health Blog Post Month here and you’ll get the prompts and 30 blog images to use if you want.
We have an interesting post today that is perfectly timed in light of all the political debate coverage of the past few weeks. Politics and religion – two topics that definitely fall under the Tough Stuff Umbrella. We would like to thank Sara for bringing this topic to the forefront and sharing why she does what she does as a Health Activist. It’s a great reminder that we all have our own backstories, our own experiences, and our own beliefs that inform our lives and the decisions we make. They are as intricate and inexplicable as anything – and yet, so deeply personal and thus: controversial. Sara’s post reminds us that we can all be different and have our own views and still aim at the same awesome goals of advocating and helping others. –Amanda
On Politics, Religion, & Advocacy
by Sara Nicastro, Moments of Wonderful
The community at WEGO Health has designated October as Tough Stuff Month. In honor of that, I am sharing about some of the uncomfortable topics I deal with as a health activist in the diabetes online community, dealing with the topics of politics and religion.
We’ve all heard or been told the old phrase about how friends should never discuss politics or religion. That is a tough adage to follow when there are news stories about parents causing the death of their children by denying insulin and waiting for a faith healing. It is hard to follow while we are in the midst of an election process that seems to be focused on topic of health care coverage.
I was not diagnosed with diabetes until my last year of college, and so my political and religious views had already been largely formed. Adding a chronic health condition certainly challenged those views. If I believe that God has a plan for everything and that He will make everything work together for good, does that include a chronic health condition that can cause life-altering complications?
Using a term coined by a fellow diabetes advocate, I have come to believe in God and seatbelts. A few years ago I was at a conference that covered, in part, the interaction of faith and health. The speaker wondered if sometimes we treat conditions with medications that could instead be treated by using some of the tenets of faith such as prayer or meditation. A few friends asked me after the session how I felt about the topic.
I proceeded to tell them that when I am anxious, stressed, nervous, or depressed, it often has a large effect on my blood glucose values – sometimes even more than most high carbohydrate foods. When I am experiencing those feelings of anxiousness or depression or am carrying too much stress, I often turn to God through prayer to help reframe and reevaluate my thoughts, feelings, and priorities. I also get my meter out to obtain a scientific measure of my blood sugar. If I need to, I plug that high blood glucose value into my pump and evaluate the need for insulin. And you know what often happens as a result of both of these actions – both together and when done separately? My blood sugar stabilizes. God and seatbelts.
It would be nice if my faith helped me to understand why I have a chronic illness, and I believe that someday it will. Right now, it helps me to be content with my current circumstances. It also provides the purpose for my advocacy.
My faith commands that I pursue justice for everyone as I treat them with love and kindness. I have encountered too many people who have been diagnosed with diabetes but have not received proper treatment or education. They feel lost, confused, and upset. I advocate for them because no one deserves to feel that way. I bring awareness to diabetes so that people everywhere, around the world and in my backyard, know the causes and symptoms of diabetes, differing treatment options, and sometimes most importantly the support available in person and online. They deserve that. That is advocacy. That is justice. That is true faith.
Don’t assume that because of my conservative political and religious beliefs that I am ill-informed or don’t believe in access to medical care for all people with diabetes. Don’t preach tolerance while dismissing anyone who has values that differ from your own. We may have different opinions on the best way to achieve our goals, but my beliefs are the very thing that inspires me to fight alongside you and to continue to advocate for the causes that affect people with diabetes.
This post explores a taboo subject of death. Through Ms Rants’ calm, thought-out perspective – thinking about death becomes less scary, less forbidden and feels “okay.” As a part of the human experience, death is a constant. In her post we see why discussions of death have a place in our world – not only in our families but in our health communities. We raise awareness, break down barriers, and expose what’s been hidden when it comes to our lives – why not think of death in the same way? Thanks for musing with us, Ms. Rants! –Amanda
Thinking and talking about death
by Ms. Rants
I think about death a lot. Well, maybe not a lot. I don’t know. “A lot” is one of those relative terms, and I have no idea how much anyone else ever thinks about death. It’s not something that’s considered “appropriate” to talk about.
When I was a kid and I’d be bored on my walk home from school, I’d sometimes have daydreams about some guy jumping out from behind a house and coming after me. In each daydream, I’d find some oh-so-clever way of escaping and getting help. In some of them I was also protecting my younger sister. Every time, I succeeded. So thinking about death, for me, is like that – sure it could happen one of these days, but I’m not usually thinking about causing it, just the possible responses to it.
Technically my illnesses are not fatal. My doctor says that they could shave a few years off my lifespan, but looking at my relatives, there’s a fair chance that, even with a shortened lifespan, I should still make it into my 80s, and probably even into my 90s, so that’s never worried me. Still, a few years back I had a rough spell for several months and I could feel the life draining away from me. I didn’t feel like I was dying immediately, but I could feel the years being cut off the end of my life. It was like someone had poked holes in me and my life was draining out, slowly but surely. I don’t know if that’s what was really happening, but that’s how it felt. I thought about death a lot at that point.
Sometimes I think about suicide. I’ve never considered actually committing suicide, but I have wondered what would happen if…. I’ve thought about the least painful way to do it. I’ve thought about who would find me. I’ve thought about the reactions of my family and friends. Considering the reactions of my loved ones has always been enough to make suicide a non-issue for me. I have to admit, though, that if they weren’t around it might be different.
There are times I wish I’d die. This is different from committing suicide because I wouldn’t intentionally take any action. And I suppose that in the long run, I don’t actually want to die. But sometimes, the pain is so intense or the burnout is so difficult that I just don’t feel that I can handle it anymore and death seems like a great way out. Eventually I think about how it would affect other people and I remember why I should live, but there are definitely times when living seems overrated and death seems like a peaceful solution.
Of course, like everyone else (I think), I think about the death of my loved ones. Sometimes I think about someone I love who has passed away, or someone I love who is approaching death. Sometimes I think about what I would do if someone close to me were to die and I can’t even begin to imagine how I would handle it. Sometimes I feel guilty for even thinking about their eventual death, but then I remember that death is natural, it’s a part of life, and there’s nothing wrong with thinking about it, despite society’s taboo. I feel even more guilty when I wish for the death of a loved one who has recently been suffering from a long, painful demise. She has lived a long (she calls 70-somethings “young”) and full life, and she herself has plainly stated that she would like to die now, instead of continuing this horrible decline. So again, I know that I should not feel guilty, and yet I do because I am as much a victim to society’s fear of death as everyone else.
Death is always there, always a possibility, always occurring, but no one talks about it, even when it’s imminent. Yes, it can be scary to confront our own mortality, but that certainly doesn’t help anyone. I didn’t love reviewing my parents’ wills and living wills with them, but if I should need that information one day, I’ll be glad to know what it is and where to find it. And if we knew that one of us was going to die sooner, shouldn’t we address it?
The thing is, we don’t always know when death is imminent. If we as a society can’t discuss death when we know it is approaching, how are we going to talk about it when it feels more abstract? And the answer is, we don’t talk about it. We avoid the conversation at all costs.
Personally, I do not believe in any sort of afterlife, but sometimes I wish that I did. I do not mind that when I die, it’s over, but sometimes I wish that loved ones who I’ve lost weren’t entirely gone. I wish they were looking down on me. There are so many different beliefs when it comes to the afterlife, but that doesn’t change an important fact: at some point, we all cease to live on this earth. Yes, every one of us will die. No exceptions.
So why can’t we talk about death?
Ms. Rants is a single 30-something living near Boston, MA. She enjoys ranting (often) and raving (sometimes) at her blog, Chronic Rants (www.chronicrants.com) She is a daughter, sister, aunt, niece, granddaughter, and friend. She’s had symptoms since a young age, and now 20 years later, she completely has a handle on her health. Some days. Sort of. Mostly. Ok, sometimes.
For this week’s chat, let’s delve into different kinds of “tough stuff” that relates directly to participating in an online community: confrontation, conflict, and drama.
The internet veils us. Safely behind our computer screens, we feel freer to express ourselves. We have the option to be anonymous and test the waters before we commit ourselves to it. Anonymity, itself, is important – especially to the online health community – because it allows the crucial first step of questioning, searching, and testing the waters to happen without interfering with our personal or professional lives. Disclosure is left up to us. We won’t be judged because we, as people, aren’t necessarily tied to what we say. We can decide what to share and with whom – all without the sort of permanence that comes with putting our names or faces to it. We are free to lurk and engage how we want to, whenever we want to. Seemingly without consequence.
Once we start engaging as ourselves (or build up an online persona) – it gets a lot more complicated. When we’re involved and exposed – we’re vulnerable. We can start to face real threats, opposition, and conflict in a new way that we hadn’t as casual users. Once we start sharing personal information and attaching real parts of ourselves to it – even just our emotions, stories, thoughts, and what we know and believe – we reach a new level of interaction.
On one hand – when we start really engaging and putting ourselves into our online communities, we start truly connecting and creating things. On the other hand – we will have to face disagreements, disorder, and conflict. As leaders of our own chats, blogs, forums, pages, and communities – we not only have to witness some drama – we also have to deflect and corral it.
What do you do when there is in-community conflict? When others in your health condition or focus disagree on something fundamental such as how to discuss symptoms or which treatments are good or bad? When terminology doesn’t always align and some people think you shouldn’t say something that you think you should?
What about in the comments section of blogs and sites where drama and “mean girls” can arise? How do you stop trolls and change the conversation when it starts to derail? What about bullying?
Even though we’re adults and all understand what it means to be kind, respectful, and considerate – we still have to deal with really tough and sometimes hurtful conversations online. Let’s put our heads together and talk about these issues and what we can do as Health Activists to make these conflicts less burdensome.
So how do you deal? How do you approach moderating comments, disagreeing with fellow leaders, conflicting over terminology or minutia, or even having differing opinions on fundamental issues?
Join us for tomorrow’s Health Activist Tweetchat to discuss these and other topics related to in-community conflict and drama. We’ll also have a corresponding panel to listen along to. Sign in to Twitter http://tweetchat.com/room/HAchat#
As part of our WEGO Health Press Corps, we sent special needs advocate Marla Murasko to the 2012 Bloggy Conference. In this guest post she shares what she learned at the conference and how it will inform her Health Activism. –Amanda
Own Your Dream! Build Your Brand @ #BloggingCon
by Marla Murasko, Special and Determined
What an amazing experience I had at Bloggy Conference, thanks to my sponsor WEGO Health. What was Bloggy Conference? A fabulous opportunity to learn how to build your brand and enhance your blog through social media, meet some amazing woman and make meaningful connections.
This was my first social media/blogging conference and it was so rewarding on so many levels. I was able to gain valuable tools and resources to help me enhance my blog and make it a better overall experience for those that read it. Understand how to target my audience and create meaningful relationships with brands that I want to partner with. Most importantly spread my message of special needs and advocacy, all while staying true to myself and share the joys of motherhood as a special needs mom.
Blogging has become such a meaningful outlet for me as a health advocate and spread my message of “awareness, understanding and compassion for children with special needs“, but it has also helped me to realize that there are other causes that I hold near to my heart, and some of them came through loud and clear at Bloggy Con. I met an amazing young lady from North Carolina, Jessica from Headbands of Hope.org, who made me realize that besides Down syndrome there are other causes that I want to advocate for…. pediatric cancer, congenital heart diseases, healthy children, literacy, music and arts for children.
Let me share with you Jessica’s story:
I also want to share with you such an amazing mom I met and am honored to say that we will be partnering together to work on some advocacy projects. Katrina, from Kat’s Cafe has a heart of gold and is such an incredibly passionate person.
So to sum it up I came back energized, focused and blessed to have attended such an amazing conference and look forward to building my network and reach by attending more blogging conferences in the future.
What blogging conferences are you looking forward to attend to build your blogging network and why?
This is a beautiful post on the immensely difficult experience of dealing with depression amidst an autoimmune disease. Karen’s prose makes you feel like you’re beside her in the doctor’s office just wishing, willing the pain and anguish away . But though she struggles, her story is one of triumph and perseverance. Bringing awareness to the mind/body connection and how important it is to find the help that you need, I think you’ll be moved by this piece and should definitely share it with your community. Thank you so much for writing it and sharing it with us, Karen. –Amanda
Making it Stop by Making it Through
by Karen Vasquez, of The Mighty Turtle
“When will this end?”
Years ago, I answered my question and have not looked back since. My answer is not one for everyone. My answer is for me. I’m sharing my answer because I am not the only person who has asked this question aloud, or alone curled in a ball on the bathroom floor.
While scleroderma changed my body, I believed accepting these changes was accepting defeat. I was scared of what would happen once I believed these changes were happening. What then? But the changes happened no matter what my beliefs. I fought acceptance. My brain answered this fight with depression. I stopped eating. I didn’t even realized I had stopped eating. I would feel hunger and allow myself to feel it and push it aside because it eventually went away. The hunger pains distracted me from my body and I learned to control them. That was pain I could set aside. Pain that I could stop. Pain I could control was just the fix a control freak like me thought I needed. It wasn’t until during a trip to the Museum of National History in Chicago, when I climbed on a scale fully clothed, saw the needle stop at 96 lbs and noticed a problem. But like my hunger pain, I pushed my weight problem aside.
That did not last. I couldn’t bend my wrists. My arms stopped swinging when I walked and my elbows remained bent. My once beautiful hands were replaced by curled up fists. I wanted to extend my fingers with ease and unconsciously talk with my hands. I longed to paint my fingernails a funky color and wiggle them in delight.
I had firmly rooted my view in denial and once I opened my eyes, it was so much to take in. I was overwhelmed. Eventually, I stopped leaving the house alone. I avoided friends and family. I missed baby showers, birthdays and holidays. I would go to the store with my ex-husband but remain in the car while he would shop. He knew I wasn’t eating. I wasn’t consciously starving myself, I would just take a few bites of a meal, play with my food a bit and then clear my plate when whoever was at the table finished eating. Eventually, my ex-husband would sit at the table until I would finish everything on my plate, but he could only do that one meal a day. At the time, he worked nights. While he was at work, I would try doing things around the house, but I would give in to pain and what I can only call sorrow. He often came home to find what used to be his wife curled up on the bed under the covers. A lump, illuminated by the television and beneath the covers and dancing lights my only thought was, “Please, make it stop.”
Little did I know at the time, I was making it stop by giving up. I don’t remember what got me in the car the day I drove myself to the psychology department at the San Diego Veteran’s Hospital. It was over 12 years ago. I had made that drive countless times from Temecula to La Jolla, it is all a blur. I just remember waiting to be seen, the feel of the hunger pains, feelings of madness and confusion, the walk from the elevator to the office window, the pattern on the chair cushions, a large screen TV with a chyron crawl that seemed so new to me. It was 2000. Don’t ask me what month. I was called back through the front window. A nurse met me and took me to a small room. I sat in chair while the nurse struggled to get a blood pressure cuff closed around my tiny arm. He weighed me and asked me if I felt faint. I remember carpet with maroon tones that was frayed when it met newly painted walls.
Back to the waiting room, chairs, TV, men sitting down and then leaving. There were no other females. Then I heard my name, “Mr. Vasquez?”
I got up slowly to an apology I had become accustomed to hearing. Being called “Mr” at the VA was a normal occurrence at that time. I was brought into a larger room with two psychiatrists. They explained to me there was a lot of walk-ins and apologized for not seeing me in an office. I looked around and saw what looked like some kind of classroom. I had been seated in a wooden chair next to a a table. One doctor next to me, the other on the other side of the table. In the middle of us on the table table lay my thick medical record and a clip board with a copy of a depression test I forgot I had taken while waiting.
One of the psychiatrists explained his job was to assess if I was a danger to myself or others. I knew the routine, I had done similar assessments in practice, but this time, I was the real patient. I was no client or student in a fishbowl exercise in psychology class. There was something wrong with my head and I felt it. The only way I know how describe it now is my head felt disconnected from my body because my body would not do what I wanted t to do.
I don’t remember the doctor’s first question. I just remember my reply, “Please make it stop.”
Then the conversation continued something like this:
“Do you want to hurt yourself or others, Karen?”
“Please, make it stop.”
“Do you think about dying?”
“Just make it stop, please.”
“Karen, do you want to die?”
“No, just make it stop.”
“Make what stop?”
“Scleroderma. Make it stop. Please make it stop.”
And then I felt a tug in the back of my throat and started sobbing. Between sobs, I sensed a conversation between the two doctors. I remember one handing me tissue while one left and returned with a woman. She placed her hand on my back and attempted to console me. I sensed more conversation. I tried to speak but there was no sound. I cried with no noise. The tug in the back of my throat turned into pain. Pain that I know so well I can feel it as I am typing these words. It felt like a hand was reaching up my throat and gripping the back of my tongue. I will never forget the pain or what I became. I tried to speak and nothing came out. I felt my voice with my body, but only silence came from my mouth. I felt rubbery, like I was turning inside out. I had become The Scream, like the painting.
I don’t know how long I sat or remember putting my hands over my eyes, but when I looked up, the doctors had gone. The woman remained. The feeling in my throat was gone. Then I found myself hugging a complete stranger. Once I let go of this poor woman from what was probably an awkward moment, she gave me some water and more tissue. I felt calm. I felt relief and I had no idea why. She gently guided me with her hand on my back me to her office using a route that avoided the waiting room. I was thankful for the privacy. She led me to a room with no windows, but plants. Plants that appeared to thrive under florescent lights and their willingness to thrive under those lights comforted me.
She had introduced herself to me as my counselor. I could finally understand what she was telling me. I don’t remember the exact words, I understand it to be this: I had become so overcome with grief from the loss of use of my hands from scleroderma, my brain was beginning to shut my body down. She told me I had major depression and severe anxiety. She made an appointment for counseling. The degrees on her wall told me she had a phD. I would be back to see her in two days. Then she brought me to the pharmacists office.
I had been to the pharmacy many times at this VA Hospital and met with pharmacists at a window before, but this pharmacist was different. I don’t remember his name. He was very tall and had dark black hair. His demeanor made me feel comfortable in his presence. He seemed excited I had my degree in psychology. I was sure why, because my knowledge compared to his education, I was like a second grader. He was a Pharmacologist with a phD in neuroscience. This was to be the first of our many meetings. He told me he would be following my progress closely.
I had assumed my depression was temporary, just like I had believed my scleroderma was. I had been told for years that scleroderma is a progressive disease and that my body would change. I heard the words, but I never believed them until I met this man with a messy desk and a working antique Mickey Mouse phone that seemed to float above the clutter.
His explanation went something like this, “Your brain has responded to the progression of scleroderma, and has started the process of shutting your body down. It’s probably why you no longer feel hungry.” He was right. I was no longer feeling hungry.
He continued, “Depression is not just a feeling, it is a physiological change in your brain and your brain has stopped producing a certain type of neurotransmitter. You will most likely need medication for the rest of your life. This is not your fault. It’s a natural reaction. You are 29 years old and you have been through more than most 50 year olds. If you did not have some kind of reaction, I would be worried, but I am going to keep my eye on your medication doses to make sure they are helping you.”
And watch me, he did. I remember spending more time in his office than my counselor’s. We talked about synapses and receptors. It was like being personally tutored about my own depression. For some reason, I was more interested in the physiological function than anything. It kept me talking to my counselor and over time, gave me a sense of empowerment. I had a truckload of issues to work out, but what I had learned from that day is that scleroderma might take me down, but depression would probably kill me first if I ever let it get so out of control again.
Now, twelve years later, I still take depression and anxiety medication. Based on my own experience through the years I do believe in the mind/body connection. When I have a bout with depression; my symptoms get worse, my pain tolerance is lower and my skin gets tighter. Depression with a chronic illness like scleroderma does not go away. Symptoms of depression come and go as the disease progresses. Because of the help I received that day I became The Scream, I have the ability to recognize unhealthy depression, anxiety behavior and symptoms so that I can get help when I need it. The day I became The Scream was not the last time I have been a Scream and I am sure I will have days like that to come. I don’t know what is to come, but since that day I have survived countless hospital stays, near death in childbirth; pulmonary fibrosis, sarcoidosis and rheumatoid arthritis diagnoses in addition to scleroderma and a divorce. All that in, addition to life’s normal transitions; like losing family members, changing jobs or losing one. Scleroderma is a part of my life, but it is not my life. It is not in my way, and it doesn’t pull me backward.
Of course I wish it away. I want all of it to stop, but there is no cure at this time and it is not going to stop. It’s okay to wish it away. It’s just not okay to ignore it or let scleroderma, sarcoidosis, rheumatoid arthritis or whatever your diagnosis consume you. If you are still reading this, I still wish I could do a Jedi Mind trick and make your illness and it’s symptoms stop, but no one can. I can tell you it’s going to be okay. Not because you are going to get better. It’s going to be okay because you, the reader, are going to take care of yourself, watch for signs of depression and get treatment when symptoms show up. Taking care of ourselves makes us powerful, and it is the only thing all humans have control over; chronic illness or not.
So I do my diagnostic tests and go to my doctor’s appointments. I take care of my health like it’s a full time job. My life depends on it.