Von Danse

@von-danse | contributor
Von has been a health warrior for many years. Her health blog is www.thetangledpathblog.wordpress.com
Von Danse

What Hope Looks Like for People With Chronic Illness

Sometimes we easily harbor hope and optimism. The fresh promise of a new year, a house move, an inspiring movie, a few good health days and we are full of enthusiasm. But this will usually pass. For all that people love recovery stories, the reality of climbing out of the rabbit hole of illness is decidedly more un-glamourous. Chronic illness is so complex and multifaceted that most efforts seem invisible. They are tiny cumulative steps, and it can be easy to start questioning their value. Hope is doing the work, holding the belief that healing is happening. Plodding, repetitive things. Not y ou’re so brave and inspiring kind of things. 30 pills a day, timed around meals, until you feel like a rattling Skittles packet. Colonics taking precedence over yoga sessions (what would Instagram say!). Drinking bottles of expensive electrolyte solutions (that taste suspiciously like bad tank water). Sitting on the shower floor to wash, getting into clean pajamas and sleeping it off. Small steps are still steps. A phrase I heard years ago springs to mind here: Imperfect action is better than perfect inaction. Still having a sauna even though you can only do 20 minutes. Three short sessions a week is still a lot of toxins sweated out over time. Too exhausted to set up a detox bath? A cat litter tray makes a good foot bath. (Preferably with epsom salt solution, not cat poo. But we don’t judge brain fog here!) Hope is often disguised as its grit-your-teeth sibling Determination, orthe black sheep cousin, Stubbornness. Is it a will to win, or just a refusal to be beaten? It may not be inspiration hashtag material, but never discount Stubbornness. It has kept many going through horrendous situations. What counts is doing the job, whatever carrot or stick gets you there. Illness warriors are not just the front line soldiers, they are the entire army support chain: food provision, weapons repair, waste removal. Toxins, parasites and viruses don’t care what mood you were in, just whether or not you turned up and did the work. The enemy wears us down, with persistence and sheer numbers, waiting for a break. No matter what, we need to keep fighting. The candida in your gut loves it when you say, bugger it, it’s my birthday, I’ll have cake. All that sugar sends them into a fungal fury. The virus wants you to push through exhaustion to see your friends. When the payback crumples your immune system, it will gleefully seize the opportunity to replicate. Did you skip a day of bitter herbals because you felt too seedy from die-off? The last few roundworms say phew, a break, nearly had us there. Hope is still investing in the process even when you can’t see forward movement. Hope is being a stubborn grinch, grumbling about your miserable, gluten-free, croissant-deprived existence, but sticking to the diet anyway. Whether you call it hope or stubbornness, these decisions are the building blocks of healing. We want to hear your story. Become a Mighty contributor here. Photo via KTVisual on Getty Images

Von Danse

Boycotting 'Everything, Everything' for Inaccurate Portrayal of SCID

Recently I was recommended a book called “Everything, Everything” by a friend, about “a girl allergic to everything who lives in a bubble house.” I thought it was great that someone was interested enough to have read it because she had a friend with multiple chemical sensitivity (which she assumed it was about). I was intrigued, and excited that some mainstream coverage was happening.   As it turns out, the main character in the book, a teenager called Maddy, lives in an air-locked, filtered, super clean “bubble house” due to a condition called severe combined immunodeficiency syndrome (SCID). This is a genetic condition where specialized lymphocytes of the immune system do not function properly. All sorts of viruses, bacteria and fungi can cause fatal illness, even normally relatively harmless ones. This disease is often known as the “boy in a bubble” disease, after the press coverage of a boy called David Vetter in the 1970s and 80s with SCID. Most children nowadays are diagnosed within a year or two due to the severity of constant infections and genetic screening. Spoiler: Maddy falls in love with the boy next door, and risks going outside to run away with him. This sets off a chain of events whereby she discovers she doesn’t actually have SCID. Her mother decided she did because she had an emotional breakdown after the death of Maddy’s father and brother in an accident. It seems a wasted opportunity. This book, and now movie, could have been a really good story about how rare illness patients can find joy and love, and provide insight as to what their everyday lives are truly like. Instead, this book lapses into tired and insulting cliches. The overprotective/emotionally disturbed Munchausen’s-by-proxy mother who imagines Maddy’s sickly infanthood to be a rare, life-threatening disease and isolates her from the world. This is a terribly harmful stereotype, one that many parents (particularly mothers) of seriously ill children have had to deal with. Doctors, neighbors and even family members have been known to call childcare services on these parents, and there have been cases of medical kidnapping by authorities. The idea that a parent experiencing these delusions could just cloister away their child for over a decade without any medical specialist review speaks more about fear-based urban myth than reality. The at-home patient living an idyllic life, hidden from the world. Maddy’s life is portrayed as rather uneventful, a dull gilded cage kind of existence. She is homeschooled online, has art projects, reads and that’s about it. Her character has not been seriously ill since she was a baby, because her mother had their isolation house built. This is completely inaccurate. In my experience, living with a non-functional immune system means serious illness will happen, no matter how careful people are. Life is a hectic roundabout of hospital visits, specialists and treatments. The patient’s ignorance and lack of motivation. The way Maddy’s character is depicted really says a lot about the common conception of the chronic illness patient. This is a young woman with internet access who doesn’t even know the basics about her lifelong health condition, and describes it vaguely as allergic to everything. She’s spent her entire life trapped in a house, but even that is not incentive for her to investigate further. She doesn’t seem to show much interest in the outside world until the boy next door opens her eyes to it all. She has unquestioningly accepted the limitations of her diagnosis and resigned herself – a child perhaps, but a teenager? Never. I would like to contrast this with reality: The chronic illness life of today is far from socially isolated and ignorant. There are informal networks all over social media, official associations and personal blogs for many different health conditions. Many of us have friends from all over the world with similar health challenges, and we are always exchanging suggestions, ideas and our treatment experiences. Neither is it the stereotypical “whine-fest,” or jumping on the latest health fad bandwagon. People are talking biochemistry, genetics, sharing podcasts from medical specialists, forwarding medical journal articles and are involved in political activism. And yes, this includes the teenagers. Patients, or their parents, spend years fighting tooth and nail for diagnosis and treatment. The movie will bring SCID, and by extension chronic illness as a whole, into the limelight, but in a very inaccurate way. It’s important that as a larger chronic illness community we all unite behind the SCID community to dispel the damage this could do, and try to turn things to our advantage. Having a book and a movie like this in the mainstream’s attention may serve as a catalyst for conversation where we can better educate people on the reality of life with serious health challenges. Being well informed will really help us to be taken seriously in such conversations. We want to hear your story. Become a Mighty contributor here. Lead image via Everything Everything Movie Facebook page

Von Danse

Losing Friends or Partners Because of Chronic Illness

Losing your close circle on top of everything else going on is really tough. People are usually encouraging and supportive at first, but after a few months of serious ill health, the gradual exodus begins. People with health issues, especially if unable to work, often aren’t respected in our society. Your social value tends to decrease and you may feel like you’ve become, well, kind of an embarrassment. A person with an illness that modern science barely understands, let alone knows how to treat, is also confronting for some to deal with. It makes them uncomfortable, so they will try and rationalize it. The inevitable not-being-positive-enough, just depressed and hypochondriac talk gets thrown around.   Sometimes it’s the change in dynamics that can shift things, e.g. party friends, relationships where you played therapist or rescuer, or people that are hooked on drama and gossip. You simply no longer have the energy for this, so they find others to meet that need. The disappearance of close friends hurts. But nothing hits below the belt quite like when a partner dumps you or cheats because you got “sick and boring.” When faced with hardship, a partner’s attitude makes a tremendous difference – whether it be we are in this together and we can beat this, or this is your problem and I don’t want to deal with it. It is a choice. The fact is if someone bails, then they are simply not long-term relationship material. This happened to me twice and at the time was heartbreaking, but in hindsight both relationships were one-sided in many ways. It’s hard not to take personally. Being angry with your sick body or holding onto hurt or anger at someone has a huge energy cost – physical and emotional – as I learned the hard way. It will impede healing. Likewise, fighting for someone who doesn’t really want to be there is a waste of energy. It took a few years and a few people for me to really get this lesson. I found mentally reframing it as a ruthless quality control process helped. Extreme events have a way of stripping off people’s social masks and showing who they really are. I’ve had a few people do an about face and come back with apologies. Either they or a relative developed an invisible illness. Plunged into that world themselves, suddenly they understood. Some of the fake people returned too. Having been through two severe crash and recovery cycles, I found a few drifted back once I returned to part-time work and a modest social life. Suddenly I was worth being friends with or dating again, and they expected to be welcomed back. In the meantime, the space they left had been filled by other, better people. I may have lost the flashy rent-a-crowd, but I have found more genuine connections. It’s about taking back your power, and not letting yourself feel like the victim left behind. If someone chooses to leave your life because of a health issue beyond your control, that is on them, and their loss. It frees up energy for healing…. and for the good crew that does stick around. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Poike.

Von Danse

Importance of Not Gaslighting in Chronic Illness Community

A few months ago I saw an online article about Lady Gaga talking about her fibromyalgia challenges. In the photo (from Instagram) she was wrapped in a space blanket and sitting in a sauna, and below it mentioned having a flare-up. About a third of the comments below it were calling her a fake, an attention-seeker, pulling a publicity stunt, etc. As anyone living with an invisible illnesses knows, this sort of response is nothing unique. Except this was in a fibromyalgia forum. We’ve all had those low, angry moments and had “Healthy Person Envy” and “Recovery Envy.” Celebrities are also targets for jealousy because they have resources most of us don’t. With enough money for specialists and treatments and the ability to outsource cleaning, childcare, cooking of specific diets, etc., at least some patients would be able to return to part-time work or study. Social media is an amazing support and information network for people with illnesses, but it comes with an aggressive, trolling side. An online post is only a selective snapshot of that point in time. Everyone’s approach to revealing their health challenges differs, both online and in person. For some its every detail, good or bad, some forward educational articles, some celebrate the small victories like going out to a friends’ birthday dinner, some barely mention it. To be fair, some recent incidents have made people jumpy – a couple of online friends have had photos stolen and used for fake profiles. A lot of research went into making these accounts believable, even fooling other patients who befriended them. This is sometimes referred to as Munchausen’s Syndrome. But it is rare. In the majority of cases it is just patients attacking each other when they should know better. Because just about every single person living with an invisible illness has had the experience of being accused of attention-seeking, hypochondria, malingering or exaggeration by friends or family. It’s also important to acknowledge that everyone’s experience of a given illness is unique. Sometimes people who have had milder cases are judgmental of the more severely affected. While it’s fantastic there are patients who got early recognition, diagnosis and responded well to treatment, they are currently a minority. Lecturing people whose conditions are more severe, or those caught in the illness-poverty cycle, that they simply aren’t trying hard enough, etc. creates a lot of ill will.   Some people’s systems are so reactive that even a new vitamin supplement can utterly crash them. A realistic best-case scenario for many of us is a partial improvement, providing we are very strict with diet, supplementation and environment. It doesn’t mean we are cured, or were never that ill. Returning to a normal, average lifestyle is generally not an option. I’ve noticed a lot of people will post an occasional “this is the real face of _____” photo of themselves lying in bed or in the hospital. Who can blame them? Choosing not to focus on your illness and taking a positive approach can get you accused of being a fake. It recently happened to me after I posted some health links online. Of course this person never heard about it when I was totally debilitated: Instagram didn’t yet exist and at the time I was far too ill to care about the outside world. Too often those who are most affected by invisible illness are themselves invisible. Being mindful of being triggered and not engaging in this sort of attack on each other is important for two reasons: 1. We all lose credibility. It plays into the hands of those that cast us as attention-seekers and hypochondriacs. 2. We need to focus our energy on facing the challenges ahead. It’s not just a case of getting more recognition of these conditions. Far more people are getting ill, at younger ages. Although there is generally more awareness of these conditions, it is still a minority of doctors, researchers and patient-based advocacy groups, all having their credibility questioned by the medical and media mainstream. Research is catching up: Lyme (and co-infections), mold toxins, toxic chemicals and genetics are becoming increasingly proven to be part of the story. But it’s still taking a long time for this to filter down to patients. It is still a widely acceptable medical practice to dismiss physically ill patients as “stressed,” “depressed” or “hypochondriacs.” It still takes quite a while, and usually several doctors, before most people get a useful diagnosis and treatment. Some doctors will give a diagnosis, but still believe them to be psychosomatic illnesses. Failed by the medical mainstream, patients have to research their own symptoms and treatment options, only to be labeled professional diagnosis collectors and drug-seekers. We are still commonly scapegoated by politicians and cast as welfare bludgers and malingerers. We have to take each other seriously if we are to expect similar respect from the rest of the world. We need to be a unified front to be able to improve the situation. There is a synergy to a group – we can achieve a lot more than as individuals. We want to hear your story. Become a Mighty contributor here. Thinkstock photo via Wavebreakmedia Ltd.