Post Twenty Eight. Disbelief About The ‘Afflicted’.

When you have a chronic illness, that’s largely invisible (both the symptoms and the people who have it), difficult to diagnose, not fully understood by science and surrounded by misunderstandings and misinformation about what it actually is and how it affects people, you encounter a lot of disbelief. From friends, family, employers, doctors, the government, the media, and the general public. People with ME seem to have drawn the short straw. While definitely not the only invisible illness to be on the receiving end of such disbelief, ME is plagued by misconceptions, and as a group we are hugely marginalised and stigmatised.

I’m lucky, my family believe me. Isn’t that shocking? That I consider myself lucky because my family believe that the illness I was diagnosed with is real?! Many people are not so lucky. My friends, the ones who remain in contact, believe me (although there was the odd ‘yuppie flu’ comment when I first told people), the ones who have drifted away, I guess they don’t? While I was still working, my employer believed me. The government simultaneously believe me and don’t believe me. They believed me when I applied for ESA (Employment Support Allowance) in the summer of 2015, but they didn’t believe me a couple of months later when I applied for PIP (Personal Independent Payments), for which I am now re-applying – hopefully they’ll believe me this time. Most doctors I’ve encountered haven’t believed me, it took me I think, ten different GP’s before I found my current GP – who is great, and believes me. As for consultants, very strangely, the specialists I saw while I still lived in Edinburgh, on the whole did not believe me, but the specialists I’ve seen in the Borders, on the whole, while not particularly knowledgeable, have believed me. Note, these are not ME specialists – there’s no such thing, not around here anyway  – these are the specialists I’ve seen for individual symptoms (gynaecology, urology, neurology and ENT). As for the media, it’s a mixed bag, I have seen a small handful of decently researched, accurate and sympathetic articles in recent months. Some articles contain some truth, but also a lot of misinformation, which really just cancels out all of the good stuff. Then there are the articles that are downright inaccurate, offensive and full of lies and outdated information. I don’t have much interaction with the general public due to being mainly house bound, but I do see their comments on the internet, and that is what this post is mainly about.

I have seen few illnesses be on the receiving end of so much vitriol, disbelief and mockery as I have ME. Every online article about ME will have comments from people who who don’t believe ME is real. The internet is full of trolls, I know that, and I know I shouldn’t take notice. But it’s hard. While I don’t feel I am defined solely by my illness, ME is certainly a very important, though unwelcome, aspect of my life. In a way, it does define my life and my ability to live it. Every single thing I do, every action, every activity, is determined by my ME, I cannot escape it, ever. Knowing that there are so many people out there who deny my existence and think it’s an excuse for laziness, it’s beyond hurtful. I’m suffering enough, I could do without having to use energy to defend myself. If these people were only found in the comments sections on the internet it wouldn’t matter so much. But these people are also doctors who don’t take their patients seriously, government workers who decide whether someone they’ve never met is eligible for disability benefits or not, MP’s who won’t stand up for their constituents and demand sufficient funding for biomedical research (my MP said it would be ‘inappropriate’ for him to interfere). Having a disabling chronic multi-system neuro-immune illness is bad enough, but because the illness I have is ME, I also have this additional layer of distress to cope with. Something that people with other illnesses don’t have. I wish I had one of those illnesses.

I had a conversation with someone on Twitter a few days ago, she has MS but had initially been misdiagnosed with ME for eight years…

“I have now been diagnosed with MS but was told I had ME for 8 years before…ME is a crappy illness as the stigma still seems to be there. I feel lucky as getting an MS diagnosis has made things easier in the medical world. In the past I’d been told “to pull my socks up” and also asked if I could give reasons for not wanting to get better.”

MS actually used to be where ME is today, in terms of perception, but then the CAT scan was invented, and suddenly doctors could ‘see’ it, and they began to take the illness, and the people who have it, seriously. We can’t see ME yet, therefore, for many, it must be “all in our heads”.

The disbelief surrounding ME is the reason why we have no treatments, no cure and no support. The government won’t invest in biomedical research for an illness, that as far as they’re concerned, is ‘all in our heads’. They haven’t learned from experience (MS), and they don’t appear to care that current research and evidence proves definitively that ME is not a psychiatric condition. Why don’t they care? Why are we so unimportant? Why is my life not worthy of saving? For me, the disbelief of the illness that has stolen my life from me, feels like the worst form of rejection a person can experience. I feel like I simply don’t matter. And it’s not just me, there are approximately 21,000 people with ME in Scotland, 250,000 in the UK, and 17 million worldwide.

When you are diagnosed with ME you are on your own – no treatment plans, no specialists and no guidance. We are diagnosed then sent away to fend for ourselves. I feel like we are soldiers that have been sent out to the battlefield with no training, lost, scared and alone. So we try to move forward, but without knowing what to do for the best. Do we rest? Do we exercise? Do we monitor our heart rates? Do we change our diet? What do we do to get better? So we immerse ourselves in research, and we realise that we have to become our own experts, no one else is going to help us here. The more we dig, the more we realise that we don’t just have an illness to deal with, we have a world full of people who are out to get us, and who are happy to let us fall down and die, and they’ll laugh as we do.

I have been collecting internet comments about ME, and some about disability in general, by the way of screenshots. They are all from random members of the public, but many people with ME do hear this crap from their doctors, their employers, family and friends, I’m in many ME support groups and forums, I hear their stories. When I tell people about the level of disbelief thrown in our direction I am, funnily enough, often disbelieved. I expect that’s because the people I’m telling, are decent and have brains. They do believe in ME and they can’t understand why anyone wouldn’t believe, I mean, the evidence is kind of undeniable, anyway, here’s some proof, and not that they deserve it, but I’ve hidden their names/usernames for their anonymity.

 

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Aren’t people delightful!

The ‘image’ of ME has moved forward somewhat recently. Jennifer Brea’s film Unrest, the work of ME charities, the advocacy group MEAction and the MillionsMissing protests, and people like me who are blogging about our own experiences, we all help to educate people about ME. Unfortunately, something has come along recently that has the power to undo the progress we have made. A documentary series, created by DocShop Productions for Netflix, called “Afflicted”.

Ok, where to start. This is what was promised during the casting process for Afflicted…

“I am working on a documentary series for Netflix that explores the experiences of individuals suffering from chronic or unexplained illnesses. I’m looking for people willing to share their stories on-camera as part of the series. Our intention is to look at these experiences through a compassionate lens and give voice to those who are struggling for answers and acceptance.”

I should make it clear that I have not, and will not watch the series, so this is not a review. I started to, I made it ten minutes, but I stopped. I didn’t want to add to the viewing figures, and I knew, based on what I’d heard from the participants, that it would upset me too much. The day it aired on Netflix I saw one of the participants, Jamison, who has ME, voicing his disappointment, he stated that he felt he had been misled. I have followed his blog for a while, and I have no reason to disbelieve what he, or the other participants, have shared about their experience. All my knowledge about the series comes directly from the people who are in it and what I have heard from other viewers.

So, the participants of the series believed they were taking part in a project that would show their lives and struggles with chronic illness through a “compassionate lens”. Unfortunately, that is not what was portrayed in the final product. The producers went in a different direction, they deliberately went with a narrative that would allow viewers to believe the participants were neurotic hypochondriacs, suffering from psychiatric disorders, and not the physical illnesses that they were diagnosed with. They wanted the audience to question their mental health and doubt the validity of these people’s illnesses, and it worked. Here is a selection of what the general public think about Afflicted, and the people in it…

 

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The people responsible for Afflicted turned their subjects into a joke. They had the material to create a sympathetic and factual documentary, but they deliberately omitted this footage, to create what ended up being “reality TV”. They took vulnerable and desperately ill people and turned them into a sideshow act reminiscent of 19th Century freak shows. I thought we were past disabled people being exhibited to the public as ‘entertainment’, but apparently not. Afflicted wanted the viewers to question if these people were suffering from psychosomatic illnesses, but they didn’t share with the audience any of the medical information that was provided (by the participants) that would allow them to answer those questions accurately. They held back on the facts and the science while leading viewers to believe they had all the information they needed to make informed decisions about these people, the decisions being, “these people have mental problems”. They deliberately played up to the doubt that people already hold about invisible illnesses. Please note, there is no shame whatsoever in having ‘mental problems’, I have them myself, it’s not uncommon for chronic illness to affect a person’s mental health, but these people’s primary conditions are not psychiatric in origin.

The footage and the interviews with the participants and their families were twisted and manipulated. They sneakily edited, chopped up and spliced together their dialogue, to have them say things that in reality, they did not say, they basically created a work of fiction, but presented it as fact. The production of this series was so dishonest, they fed lies to their audience, knowing they would lap it up. They told viewers that they had offered one of the women a treatment worth $25,000, and she had turned it down, for no good reason. This led people to think she didn’t want to get better, that she was revelling in her illness and simply loving the attention. In actual fact, the series didn’t include the bit where she sought advice from her medical doctors, who told her that treatment would actually be dangerous for her, and her specific condition, and they advised she not go through with it, that is why she turned it down.

Viewers were led to believe that these people have spent an inordinate amount of time and money pursuing alternative treatments, for which they have received a lot of scrutiny, you know, given they had apparently turned down actual medical treatment. But the participant’s own scepticism of some of these treatments, which were at the suggestion of the production company, was edited out. Many of these people have concrete diagnoses and test results, but these were also excluded. So much of the criticism they have recived since Afflicted aired has been based on the narrative that they, the audience, were fed, that their problems are “all in their heads”, but they wouldn’t accept that they needed mental help. What wasn’t told, was that most of them have been referred to psychiatrists or psychologists at some point since they’ve been ill, and none of them have been told that their physical symptoms have a psychiatric cause. Many of them have even, in desperation, tried psychiatric interventions/medications, which did not work, they are still ill. They even had to undergo (and pass) a psychiatric evaluation in order to participate in the show was, which of course was conveniently left out.

During the filming process the crew attended a ME symposium and interviewed leading ME scientists, but these were omitted from the final product. Rather than have their actual doctors on screen, they had a random psychiatrist, who had never met any of these people, and had no knowledge of, or expertise in their actual diagnosis’s. He was there purely to speculate about what was making them so unwell and aid the sensationalist narrative.

“They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” Something that psychiatrist man said.

This series has done unspeakable damage to the chronic illness community, not to mention the people who actually participated in the series, who have since been subject to abuse, harassment and even death threats. People with invisible illnesses already face so much judgement and disbelief, we could do without the media aiding this idea that we only ‘think’ we are unwell but actually have psychiatric problems. Would we ever see a ‘documentary’ about cancer, in which the audience is encouraged to question whether they are really ill or not? Of course not, people would be outraged if that happened. Afflicted was a sick game, it was entertainment for able-bodied/healthy people to guess what the ‘freaks’ ailments were, and they had a lot of fun doing so.

“I think that they seem to enjoy being cared for, and doted on. It gives them purpose and meaning. Folks love to play victim.” Random review from some idiot.

I’ve seen many reviews go along the same lines as this. This couldn’t be further from the truth. I was healthy, active, fit and independent, I had a great job, was travelling and life was good. Now, I’m a thirty eight year old who is dependant on her mother. My mum could tell you how much I dislike asking for and accepting help (although I am of course grateful). When I tell her that I worry about being a burden, she tells me, that if anything, I don’t accept enough help. How can anyone think that any of us enjoy this life? I get no sense of purpose or meaning from having ME, what I do about it gives me a sense of purpose (this blog), but I absolutely hate, with a passion, being ‘cared for’. And I am no victim, thank you very much!

Since Afflicted has aired, some of the participants have written about their experience, I have shared these at the end of the post. Please read their stories, especially if you have watched it, they deserve to have their truth heard.

This whole thing with Afflicted had taught me a valuable lesson. I was recently approached myself to potentially take part in a TV documentary. In May I was contacted by someone who said he worked at Wild Pictures, a UK based production company, he told me he had read my blog and wanted to speak to me regarding an upcoming documentary they were making for the BBC. I happened to have written about the subject matter (assisted/accompanied suicide and my Dignitas membership) in my blog. We corresponded via email for a bit and were arranging a time have a Skype chat, I gave him some days in the following week I could speak, but I never heard from him again. I’ve emailed a couple of times since and haven’t heard back, so I guess it’s not happening.

It’s fine if they don’t want me and my story as part of the documentary, it would have been a massive, and scary, undertaking for me, I don’t even like having my photo taken. It will also be better for my health to not take part. I thought of it however as an opportunity to raise awareness about my ME, on a massive scale, given it would be on the 9pm slot on BBC One. I imagined people watching, seeing a woman with ME, and hearing that it prompted her to join Dignitas, “wow”, they might think, “ME is obviously a more serious illness than I realised”. So I was disappointed when I realised it wouldn’t happen, a tad relieved too, but mainly disappointed.

I was also upset by this researcher’s lack of consideration, and manners. I’ve never done TV stuff before, so maybe this is normal behaviour, but it worries me that TV researchers feel it’s ok to seek out vulnerable people, who they know to be very unwell, let them feel that they are being heard, offer them an opportunity, and then just drop them, with no explanation. He could at least have had the consideration to tell me I wasn’t needed, rather than raise my hopes and then just cut off communication.

It has also crossed my mind that this could have been a scam. In the original email I received, via my blog, the researcher had spelled the presenters name (Miriam Margolyes) incorrectly, twice, something that my sister noticed and thought was a bit of a red flag. So she may have been right. But shortly after this I also received an email from Dignitas themselves (as a member I’m on their mailing list), they had also been contacted by Wild Pictures looking for people to contribute to the project. That made me think it was legit, but honestly I don’t know.

Given how the participants were misrepresented on Afflicted, I think I may have had a lucky escape here. I am happy to speak about my feelings on this subject to anyone who wants to learn, but I’m not willing to be messed around and misled and I am not willing to let anyone waste my time or my limited energy. How the researchers treat potential interviewees is likely a reflection of how they treat the people who are selected to take part, and it’s not something I want to put myself through. I don’t think I’d cope well with having no control over the final edit, or how I would be portrayed. If they misled me as the Afflicted subjects were, and I was then subject to malicious internet comments, I would be devastated, and I’m sure it would be pretty damaging to my mental health. I now realise that I cannot trust anyone to tell my story, but me.

Please read the Afflicted participants stories for yourselves.

“We were all told that we would be participating in a project that would show our lives and our struggles with illness through a “compassionate lens.” We participated because our diagnoses are misunderstood and stigmatized. We thought that revealing some of the most intimate moments of our lives would lead to greater public understanding. We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”

The Truth Behind Netflix’s ‘Afflicted’ – A group blog post by some of the subjects of Afflicted

Their individual stories. 

Jamison

Jesse and Bekah

Nick and Bekah

Jake

Pilar

Jill

Janine

What other people are saying about Afflicted. (I will update this as new articles are published)

The Mighty. Why the Netflix Docuseries ‘Afflicted’ Is Harmful for the Chronic Illness Community.

Patheos. 3 Ways Netflix’s “Afflicted” Hurts People with Chronic Illness.

MEAction. Netflix’s docuseries “Afflicted” exploits and stigmatizes chronic illness.

After M.E. After The Afflicted Freak Show.

Consumer News. Netflix says it won’t remove documentary about chronically ill that participants say led to cyber-bullying.

Nylon. The Cast Of ‘Afflicted’ On Netflix’s Misrepresentation Of Chronic Illnesses.

The Hollywood Reporter. ‘Afflicted’ Executive Producer Responds to Controversy, Protest Letter Signed by Lena Dunham, Monica Lewinsky.

Netflix Hit With Defamation Lawsuit by the Subjects of the Docuseries ‘Afflicted’.

 

NEWS 

Health Rising. The Cortene Chronic Fatigue Syndrome (ME/CFS) Drug Trial Begins.

https://www.healthrising.org/blog/2018/07/14/cortene-chronic-fatigue-syndrome-me-cfs-drug-trial-begins/

ME/CFS Research Review. The microbiome hypothesis: Lipkin’s collaborative, part 1.

https://mecfsresearchreview.me/2018/07/17/the-microbiome-hypothesis-dr-ian-lipkins-collaborative-part-1/

ME/CFS Research Review. The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion, part 2.

https://mecfsresearchreview.me/2018/08/14/the-heart-of-me-cfs-lipkins-collaborative-probes-the-impact-of-exertion/

Stat. The medical community is changing its mind on chronic fatigue syndrome. Why aren’t insurers?

https://www.statnews.com/2018/07/19/chronic-fatigue-syndrome-insurers-disability/

Belfast Telegraph. Doctors ‘do more harm than good’ sending ME patients to gym.

https://amp.belfasttelegraph.co.uk/news/health/doctors-do-more-harm-than-good-sending-me-patients-to-gym-37129397.html?__twitter_impression=true

Nature. Insights into myalgic encephalomyelitis/chronic fatigue syndrome phenotypes through comprehensive metabolomics.

https://www.nature.com/articles/s41598-018-28477-9

Sci-Hub. Are ME/CFS Patient Organizations Militant? Patient Protest in a Medical Controversy.

http://sci-hub.tw/10.1007/s11673-018-9866-5http://sci-hub.tw/10.1007/s11673-018-9866-5

Health Rising. New Harvard Chronic Fatigue Syndrome (ME/CFS) Research Center Fulfills Crucial Need.

https://www.healthrising.org/blog/2018/07/08/new-harvard-chronic-fatigue-syndrome-me-cfs-research-center-fulfills-crucial-need/

ScienceDaily. Insights from metabolites get us closer to a test for chronic fatigue syndrome

https://www.sciencedaily.com/releases/2018/07/180709120146.htm

MEAction. Denmark has some recommendations for ME…and they’re pretty awful.

https://www.meaction.net/2018/07/09/denmark-has-some-new-recommendations-for-me-and-its-pretty-awful/

Bateman Horne Centre. New Insights into Exercise Intolerance and Medication.

http://batemanhornecenter.org/systrom_cpetresearch/

HuffPost. Having ME Is Like Being Permanently Encased In A Suit Of Armour.

https://www.huffingtonpost.co.uk/entry/myalgic-encephalomyelitis-how-it-feels_uk_5b61badbe4b0fd5c73d524cc

InsideSources. The Monster Disease Medical Schools Don’t Mention.

https://www.insidesources.com/monster-disease-medical-schools-dont-mention/

Simmaron Research. System Reset? Study Suggests Pro-Inflammatory / Autoimmune Reset Occurred in Chronic Fatigue Syndrome (ME/CFS).

http://simmaronresearch.com/2018/08/system-reset-chronic-fatigue-syndrome-mecfs/

HuffPost. It Seems Impossible That People Don’t Believe Having ME Is A Serious Illness.

https://www.huffingtonpost.co.uk/entry/myalgic-encephalomyelitis-chronic-fatigue-syndrom_uk_5b6ac35ee4b0fd5c73df30a9

CNN. Millions suffer from an invisible disease: My ME/CFS story.

https://edition.cnn.com/2018/08/08/health/iyw-ryan-me-cfs-story/index.html

Health Rising. The RCCX Hypothesis: Could It Help Explain Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and other Diseases?

https://www.healthrising.org/blog/2018/08/09/rccx-chronic-fatigue-fibromyalgia-eds-pots/

Disability News Service. MPs have won praise after calling on the government to ensure disabled people finally secure equality in the protection they are offered by hate crime laws.

https://www.disabilitynewsservice.com/mps-win-praise-for-online-abuse-proposals/

The Pool. The activist helping remove the stigma surrounding wheelchair users who can walk.

https://www.the-pool.com/news-views/latest-news/2018/33/youtuber-annie-segarra-is-helping-remove-the-stigma-surrounding-wheelchair-users-who-can-walk

Questioning Answers. On the question of suicide risk and chronic fatigue syndrome / myalgic encephalomyelitis continued.

https://questioning-answers.blogspot.com/2018/08/on-question-of-suicide-risk-and-MECFS-continued.html

ProHealth. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome-Metabolic Disease Or Disturbed Homeostasis? Study proposes that stimulation of hypothalamic mast cells activates microglia leading to focal inflammation in the brain.

https://www.prohealth.com/library/myalgic-encephalomyelitis-chronic-fatigue-syndrome-metabolic-disease-disturbed-homeostasis-84606

The Mirror. ‘I can barely walk and I’m bed-bound 23 hours a day – M.E. nearly killed me’.

https://www.mirror.co.uk/news/real-life-stories/chronic-fatigue-syndrome-left-bedbound-13091318

The Canary. The UK’s General Medical Council just threw 250,000 disabled people under a bus.

https://www.thecanary.co/opinion/2018/08/22/the-uks-general-medical-council-just-threw-250000-disabled-people-under-a-bus/

ME/CFS Research Review. Significant association of DNA variants with self-reported ME/CFS. 

https://mecfsresearchreview.me/2018/08/28/significant-association-of-dna-variants-with-self-reported-me-cfs/

Welfare Weekly. Scottish government seek ‘anti-terror’ powers to spy on benefit claimants. The powers are typically reserved for protecting the public against terrorism and serious crime.

https://welfareweekly.com/scottish-government-seeks-anti-terror-powers-to-spy-on-benefit-claimants/

TheMindMap. Belle and Sebastian – Going Through The Emotions. Interview with Stuart Murdoch. 

https://themindmap.co.uk/interviews/belle-and-sebastian-going-through-the-emotions/

ABC. ‘Your disease is real’: Breakthrough in diagnosis of chronic fatigue syndrome.

http://www.abc.net.au/triplej/programs/hack/breakthrough-in-diagnosis-of-chronic-fatigue-syndrome/10188210

Post Twenty Six. How Having ME Has Affected My Mental Health.

I would like to warn you that this post may be triggering to those who have experienced suicidal thoughts.

I feel like this post is a bit all over the place. I’m currently struggling to put my thoughts in order, and I keep going back for further edits. I have so much to say, and so much I’m scared to say, but I feel that it’s important to be honest about how having ME really affects me. I often feel I’m a failure for succumbing to depression since having ME, but the more I share, the more I hear from others who are in the same situation, and that makes me feel like I’m maybe not quite so crazy after all.

I’ve become used to sharing details about my life with ME, and I want to become used to sharing details about my depression and anxiety too. They all have stigmas attached, they needn’t and they shouldn’t, but they do, and the only way I can see to remove the stigmas attached to these illnesses is to normalise them, and that means talking about them, and how they affect me. I love what Geroge Monbiot said in a recent-ish article in The Guardian about his prostate cancer diagnosis…

“There are, I believe, three steps to overcoming fear: name it, normalise it, socialise it. For too long, cancer has been locked in the drawer labelled Things We Don’t Talk About. When we call it the Big C, it becomes, as the term suggests, not smaller, but larger in our minds. He Who Must Not Be Named is diminished by being identified, and diminished further when he becomes a topic of daily conversation.”

I love that, “name it, normalise it, socialise it.”. I think that can be applied to ME, depression and anxiety, and any stigmatised illness. The attached stigma, the misunderstanding, the shame, the mystery, will diminish when it becomes a topic of daily conversation. So I plan to do that, here and in person, no matter how uncomfortable people are to hear it.

It’s not at all uncommon for people with ME to develop depression and/or anxiety. I always feel quite amazed when I hear from someone with ME who hasn’t had it impact heavily on their mental health. I would be one of those people if I could. But just as I can’t ‘just stop’ having ME, I also can’t ‘just stop’ having depression or anxiety. This seems to be a difficult concept for some people. They can say they understand, but then their lack of understanding can jump out at me during conversation. When talking to people about how my depression or anxiety is affecting me, I’ve been told “you just need to not let it upset you” or “you just need to stop worrying about that”. But would the same people say, about my ME symptoms, “you just need to not let that migraine hurt your head”? I don’t think so. ME gives me symptoms. Depression and anxiety also give me symptoms. That’s how it is.

Right now, one of my main obstacles (symptoms) is, what I call, the nervous dread. It’s the feeling of fear that I often get, and is the exact same feeling that I had as a child when I woke up terrified after a nightmare, except now, the nightmare is my life, and the feeling can last for days at a time. What comforted me as a child, when I woke up after a nightmare, was to crawl into my mum and dad’s room, make a little nest on the floor with my quilt and go to sleep there. That helped me because I knew I was safe, that I had someone looking out for me and that I wasn’t alone. This feeling of dread is often how my anxiety and depression manifests, and I (and my counsellor) believe that it basically stems from the same place, the fear of being alone, forgotten or abandoned. I don’t just mean the literal isolation that I live in, or the fear of being abandoned and forgotten by the people in my life, although that affects me deeply too. I’m also talking about the general lack of understanding about ME as a whole –  the lack of funding for biomedical research, the lack of support from our healthcare providers, the lack of recognition by our governments and our media that ME is a serious, disabling and life-threatening illness – this too all makes me feel abandoned and forgotten, invisible.

It’s not just ME, depression and anxiety are vastly misunderstood illnesses too. I used to be one of the people who didn’t fully understand depression, but I’ve never disbelieved anyone. When someone told me how their depression affected them, I can’t say I always understood it, but I believed them, because why on earth would someone lie about that? I’ve had people confide in me about suicidal feelings, before I ever felt such things myself. The first time I had no idea what to say, I just had to wing it, I sensed that my friend needed to talk, so I let them talk. I think, I hope, I handled it sensitively. I always think about what my words mean to others, I never want my words to hurt anyone. Importantly, I didn’t tell them how they should be feeling. I never tell people what they should feel, people tell me what I should be feeling, a lot. When I tell people about my fear of never being well again, for example, I’m told I should be more positive and feel hopeful. Why? Why, for a moment, can I not just feel what I feel? Are people with incurable illnesses, who are unable to live the life that they want, who have had everything stolen from them, never allowed to feel despair, or grief, or sadness, or frustration, or anger? Sometimes it seems, apparently not, and when we do, we must keep it to ourselves.

I have a huge amount of fear about never being well again. I do not want to live the rest of my life as I am now. Most of the time I keep it to myself, but sometimes I want to talk about it, and cry about it, I want to be able to talk about what scares me. But more often than not I’m met with ‘but there will be a breakthrough one day’ or ‘they will find a cure’. Really? You know that for sure? You’re 100% certain about this? The fact is, not all illnesses have cures. Not everyone who gets ill, gets better. People die from illness all the time, sometimes quickly after an aggressive illness, sometimes slowly, after decades of a malingering chronic illness. To reach some sort of acceptance about my life with ME, I need to accept all the possibilities, and one of them is never getting better. To be shut down when I try to talk about this only adds to my isolation, and loneliness, and as a result, my depression worsens.

When people insist that I will get better, it can be really hard to hear, it makes me feel so much pressure, because if I don’t get better, then somehow it must be my fault. I would love it if people, when saying this, would also acknowledge, in the same conversation, that I might not get better. Being hopeful is fine and good, but also be realistic, acknowledge my life, don’t erase me, my suffering or my fears. No one knows if I will recover or not, no one. It’s entirely possible that I will not, and when I talk about that, it’s my attempt to try to normalise it, to accept this, it doesn’t help to then be shot down. Once I’ve accepted it, then I can work on making my life, as it is, as meaningful and fulfilling as possible. I cannot spend my life clinging on to a potentially false certainty that a cure will be found, because if that doesn’t happen, I won’t be able to handle the devastation. I’d much rather learn to live my life, as it is, as well as possible, and one day, hopefully, maybe I’ll be surprised with the news that there is a cure, or a treatment that works, but I cannot pin all my hopes on that, it’s simply too much pressure for me to cope with.

How I feel (mentally) is often, unfortunately, and unhealthily (I think), at the mercy of other people. My illness has caused a lot of the people in my life to drift away. I’ve been left with very few people I feel close to, and I’m constantly worried about losing them too. Because of my anxiety, and due to living in this bubble, with too much time to think, any perceived (by me) slight from one of these people is magnified by a million, I obsess over it, to a scary degree. If I extend an invitation to someone to visit me, for example, and it’s ignored, the reasons why will consume me. My paranoia will take hold and it will eventually lead me to a very dark place. But it is important to state that no one is responsible for me feeling like this, it’s not even me, it’s the illness. I don’t want anyone to feel they have to distance themselves from me, for fear of triggering my mental health problems. My depression and anxiety will find a way, when they want to, and they often do pop up with no obvious trigger whatsoever.

People are also what I need, when I’m at my lowest, in order to survive. I can’t speak for everyone, but, there’s this myth that you can’t speak about suicide to someone who has suicidal feelings. Like, if you mention it, it will suddenly give them ‘ideas’, but the thing is, those ideas are already there. The word ‘suicide’ itself, does not make me suicidal. I only feel that way when my depression is at its worst, at the moment, it’s happening roughly twice a month (I think severe PMS may play a part). The rest of the time, I can feel low, without feeling actively suicidal, but I do spend a lot of time thinking about my own death, and hoping for a natural death, my escape from ME. When I am thinking about doing it myself, and wishing I had ‘the guts’ to do it, it becomes overwhelming, and what helps me get through it, is talking about it, in that moment, that’s what generally diffuses it. Sharing how I’m feeling, however ugly, scary, upsetting or uncomfortable, with someone who cares about me, whom I trust, who can make me feel less alone, is what helps me through it. I think people worry that they won’t know how to respond, that they won’t have a solution, that they won’t know how to ‘fix me’. But they don’t need a solution, I’m not asking for a solution, or to be ‘fixed’. Just be there, just listen, just let me talk about how I feel, tell me you’re here for me and that I’m not alone, let me cry, let me feel I’ve been heard, tell me that what I’m feeling is ok and that you understand. I need people who will willingly give me their time, who will accept me and all the elements of my personality that make me ‘me’, people who can be patient with me, especially if I need to go over and over the same conversation, people who can be kind to me when my depression and anxiety are making me be unkind to myself.

Ultimately I try to remember that when I feel this way, I must not make a permanent decision based on what is likely a temporary feeling. With that and the fear of it going wrong and ending up worse off, and the thought of someone having to find me afterwards, is what has stopped me so far. But it’s an incredibly painful battle each time, it’s the worst thing I’ve ever experienced in my life.

What I just said about needing people to accept me and all of the elements that make me, ‘me’. This would include not telling me, when I’m in a pit of depression or an anxiety spiral, that I’m ‘too sensitive’, for example. I am a sensitive person, but I’ve come to learn that that’s not a bad thing. I’ve grown up with people telling me that I’m ‘too sensitive’, and it’s always come across as accusatory, or derogatory, so I used to think it was something to feel ashamed about, that it made me weak. But this is actually a really important part of who I am, and I wouldn’t change it. I’m able to tune into and understand my feelings, and it helps me tune into the feelings of other people too, it’s what gives me empathy. I would like it if this sensitivity didn’t impact as heavily on my anxiety and depression as it does, and this is something I am working on with my counsellor. For example, I’m very sensitive to how my actions affect others, when I find out that I’ve hurt someone, it hurts me, deeply. My anxiety will then take hold of me, I’ll agonise over it for days, weeks, months or years (I can still feel anguish over things that have happened decades ago), and it won’t let me move on until I have resolved it. It’s exhausting, it prolongs the upset, it keeps my body in a constant state of fight or flight, and that impacts heavily on my ME symptoms.

I asked my counsellor recently, in desperation, how I could stop letting things that upset me, upset me. This led to a conversation that actually resulted in me feeling a lot better about who I am. I can’t just change the things that make up the elements of who I am, and I certainly wouldn’t want to erase my sensitivity completely, not if it meant losing my empathy. I like empathy. I think it’s a highly admirable quality, and it’s the quality I value the most in others. I’m not suggesting that I’m better than anyone else, or anything. But I have always considered what my actions, or my words might mean to another person. One of my faults is that I tend to expect the same from others, and I judge them for not living up to my high standards, and the only person who gets hurt by that, is me.

Anyway, It’s not surprising how frequently people with ME develop depression and/or anxiety. We’re grieving for everything that we’ve lost, and the grieving process works the same way whether it’s due to the loss of a loved one or the loss of your health. I’ve grieved for people, I know what that’s like, I still feel pangs of grief when I think about my dad. When it’s unexpected, like when I come across an old photo, or I have a dream about him, I get a jolt of emotion that rushes through me, often picking up other memories and feelings on the way. I can think I’ve been doing ok, in terms of my dad grief, but I can very quickly turn into a panicked sobbing wreck when triggered unexpectedly. And he died ten years ago (it was ten years on 4th June). I’m still a newbie in the ME world, four years in, and I’m still very much dealing with the loss of my old life, and the loss of everything that I thought my life could become. I can be having an ok day, where, despite the sheer shittiness of my illness, I can be feeling fairly calm and content with what little I have. But then, BAM, something comes along that triggers the grief and throws me off course. I’m talking panic attacks, hyperventilating, the nervous dread and when it becomes too overwhelming, and when I feel that I’m dealing with it alone, suicidal thoughts. Sometimes the grief makes me curl up into a ball and just cry and cry, sometimes I just want to tear the room apart with pure rage and anger, sometimes it just renders me numb, flat, completely emotionless, and sometimes it makes me want to die.

For a while I really thought I was doing so much better, in terms of accepting my illness. But I’m not doing well, not at all. It’s kind of been compounded recently due to the payback I’ve been suffering since Iceland and also with my current PIP (Personal Independence Payment – a UK disability benefit) application. At the moment I’m trying to cope with the knowledge that this particularly bad relapse is probably due to my own decisions. The trip to Iceland to see Sigur Rós, going to my mum’s house for three hours to spend time with my family for a belated Christmas celebration only four days after returning from Iceland, then the screening of Unrest just thirteen days after that. The trip was at the end of December, and I still haven’t returned to my pre-Iceland levels of ME, and I don’t know when or if I ever will. Some ME relapses are permanent, and right now, I’m trying to deal with the fact that I may have done this to myself. This has caused what I can only describe as a shitstorm of emotions and symptoms; grief, anger, guilt, hopelessness, anxiety spirals, panic attacks, and suicidal thoughts. All of this emotional over-exertion of course impacts on my ME, and causes those symptoms to worsen. When this happens I wish I could talk my way out of it, but I just can’t. It’s actually entirely rational, to grieve over the loss of ones own life, whilst still being alive. I do believe that feeling these feelings will help me on my way to acceptance, more so than repressing them anyway.

My PIP application. I’ve put this off since 2015, my first attempt was just so traumatic, but I need the money, and I am eligible, it’s just a matter of convincing the people at the DWP. I haven’t received the ‘How your disability affects you’ form yet (I requested it two weeks ago) but in the meantime I have been preparing for it. This means I’ve spent a lot of time thinking, in depth, about how my illness affects me, which is the exact opposite of how I usually try to cope with this. I’ve lost my independence and my freedom, I do not live my life as I want to, I don’t even live where I want to. My entire life is now entirely about compromise and adaptations, based around my ME. I’ve made so many adjustments to my life in order to manage my illness. I’m used to the fact that I now only wash once per week, rather than once per day, as I did pre-ME. I’m used to the fact that I only eat twice per day, rather than three times per day, as I did pre-ME. I’m used to the fact that I can’t leave my house every day, as I could pre-ME. My day-to-day life is now built around my limitations, and sometimes, I feel quite proud of the way I’ve adapted. My life now, while completely unrecognisable when compared to my pre-ME life, is simply, my life. It is what it is. But now, as forced by my PIP application, I have to really think about how my illness affects me, and not in a ‘I’m proud that I’ve adapted’ kind of way, but in a ‘bloody hell this is thoroughly depressing, my life is total shit, I can hardly do anything anymore’ kind of way. I used to manage sixteen hours of non-stop activity during a day, now I struggle after fifteen minutes of activity. My capacity for doing stuff is now around 10% of what it was before I was ill. When writing it down for my PIP form, and explaining why I can only wash once a week, and how it affects me, it’s nothing to feel proud of, it’s depressing. When I write about why I can only prepare two meals per day, it’s depressing. When I explain why I can’t leave the house every day, it’s depressing. I expect this has a lot to do with the current state of my depression.

I mentioned the isolation. This is a huge factor in the state of my mental health too. I’m an introvert, I enjoy my own company and before ME came along, solitude was a choice for me, a luxury, even. But my depression and anxiety have turned me into someone who fears to be alone. When I get this nervous dread, I panic at the thought of having a day without human company. But I also have severe ME, so I don’t have energy to interact with humans every day, when I do, my ME symptoms worsen. So it’s a constant unwinnable battle between my ME and my mental health. Even with my introverted tendencies, I/humans need interaction with other humans, real life interaction. Social media is great, but it doesn’t compensate for the lack of real people in my day-to-day life. Add in the fact that I spend my days in the dark, because I’m sensitive to light. I also spend my days in an artificial silence, always wearing either noise cancelling headphones or ear plugs, because I’m hypersensitive to noise (and I currently have some rather loud neighbours, human and canine). I’m either huddled alone in bed, or alone on the sofa. Maybe I could cope with it a bit better if I could get lost in a book, but I have brain fog, I can no longer follow a story line, I can’t retain or process new information. I tried audio books but I can’t cope with them either, I simply don’t possess the required levels of concentration, my wreck of a body cannot produce the energy needed. Who knew, before I had ME, that reading, something I did every day, getting through roughly one novel per week, could one day be an impossibility. I have loads of TV shows and films in my Netflix and Amazon Prime watch lists, but at the moment I can only watch what I’ve seen before, because I can’t keep up and follow new story lines. I have a few TV shows that I keep on reserve for easy watching –  Grey’s Anatomy, The Big Bang Theory, 24, Parks and Recreation, Gilmore Girls, Little House On The Prairie, Gossip Girl, Friends… Re-watching these shows, as well as helping me to pass the time, I find it comforting, the familiarity of the characters. It’s the closest thing I have to going to work with the same people every day.

I’ve mentioned before that I’m a member of Dignitas (a Swiss non-profit members society providing assisted/accompanied suicide to members of the organisation who suffer from terminal illness and/or severe physical and/or mental illnesses). Dignitas, for me, is a separate topic, it’s not about depression, I actually became a member before I had depression. It is not based on fleeting suicidal feelings or fluctuating depressive episodes, it isn’t a knee jerk reaction, it’s not something I can’t understand, it is not something that scares me. Even when I’m feeling at my best, both in terms of ME and my mental health, Dignitas is still an option, and a rational option at that. If I decide to go this way, it will be based on rational and careful thought and discussion with my GP and counsellor. I won’t even get the provisional green light from Dignitas if they don’t trust my decision and believe me to be of clear and rational mind. Knowing that that Dignitas is there gives me comfort. The application process is daunting though, in terms of the paperwork, and it’s expensive. Just to make the initial request, that may be turned down, costs over £2000. Some people make that request and pay the money, get the provisional green light, but not follow through. Apparently, gaining that initial green light, can provide an additional layer of comfort, that allows people to keep going, knowing they do now have that option. That might be an option for me too at some point. I do think, when/if the time comes that I simply do not want to carry on with my life as it is, Dignitas is a much better option that suicide by my own hand, and so much easier on those who are left behind. Ideally, assisted/accompanied suicide will one day be legal in the UK, or Scotland, but I can’t see it happening anytime soon, the UK are rather behind, when comes to some things.

At the moment, in terms of ME, there is a feeling of potential change in the air. The film Unrest and the charity #MEAction have done so much for the awareness of ME worldwide. My mum attended the Invest In ME Research annual conference last week and heard some of the most prominent scientists in the field of ME research speak, she said there was a feeling of hope in regards to the current biomedical research. The NICE (The National Institute for Health and Care Excellence – the UK Department of Health organisation who provide guidance on the appropriate treatment and care of people with specific diseases and conditions) review of the ME guidelines is on the horizon, and will be completed by 2020. My fellow #MEAction Scotland volunteers met with the Scottish Parliament Petitions Committee today to discuss our recent petition (online and on paper we ended up with around 7000 signatures!) in which we are calling on the Scottish Government to review the level of support for people with ME in Scotland, in terms of biomedical research, education for healthcare professionals and specialist care for patients (the link to watch this is at the top of the NEWS section below). Some MP’s, including Carol Monaghan, recently put forward a request to the House of Commons Backbench Business Committee for a full debate about ME in the Main Chamber at Westminster. This has now (kind of) been granted, not for the Main Chamber, but for a three hour debate about ME treatment and research in Westminster Hall. Hopefully this will lead to a debate in the Main Chamber of the House of Commons in the Autumn.

So there are people doing things, and I want to feel hopeful, but so have the people who have been living with ME for decades, and seen no change. It is possible that biomedical research will find the cause of ME, to then find there is no cure. It is possible that the NICE review won’t in fact change everything, or they may change the guidelines for the worse. It is possible that the Scottish Government and Westminster will continue to neglect people with ME. We still have a long way to go and I want to be able to hang on, but I don’t know how long I’ll be able to. I don’t want it to, but I’m currently living knowing that my depression may one day ‘get me’. At the moment I’ve told myself I can’t go anywhere before the NICE review in 2020. I like to give myself a date, something firm in the diary to cling on to. The NICE review might just change things for the better for people with ME in the UK, and I at least need to live to see what happens there. Hopefully by then, I’ll have found something else to live for, I’ll have managed to find meaning in my life, I’ll have found somewhere to live that makes me happy, comfortable and settled (and with less need for noise cancelling headphones), and hopefully I can keep that going, and keep pushing back that date in my diary, at least until I’m an old lady with lots of cats.

When I do die I want my body to be utilised for ME research. If you live in the UK, this is how you can help progress ME research after you die. The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and their aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research. Learn more here:

http://www.meassociation.org.uk/research/current-research/post-mortem-tissue-bank/

Follow these links to mind.org.uk to learn about depression and anxiety.

Depression

Anxiety

 

NEWS

The Scottish Parliament Public Petitions Committee hear evidence from Emma Shorter and Janet Sylvester of MEAction Scotland and Professor Chris Ponting, Chair of Medical Bioinformatics at Edinburgh University and Deputy Chair of the UK CFS/ME Research Collaborative.

https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10%3A10%3A46&clip_end=10%3A55%3A21

Futurism. Scientists are now calling the link between depression and inflammation caused by a faulty immune system definitive. Whether it’s causal or not, the connection opens up new avenues for treatment, and new hope for sufferers. 

https://futurism.com/researchers-depression-may-be-a-physical-illness-linked-to-inflammation/

ME/CFS Research Review. A team led by Edinburgh University’s Professor Chris Ponting has won funding for a PhD student who would follow up and expand on remarkable recent findings made at Stanford University, where Dr Mark Davis may have pinpointed a major issue in the immune system in ME/CFS.

https://mecfsresearchreview.me/2018/05/31/a-plan-to-replicate-mark-daviss-remarkable-findings-of-immune-activation-in-me-cfs/amp/?__twitter_impression=true

The ME Association. Inquest Ruling: Young drama student Merryn Crofts killed by ME.

http://www.meassociation.org.uk/2018/05/inquest-ruling-young-drama-student-merryn-crofts-killed-by-m-e-18-may-2018/

The Times. ME sufferer who was dismissed as hysterical vindicated in death.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w

Health Rising. The Migraine Drug Explosion Begins: Could Fibromyalgia and ME/CFS Benefit?

https://www.healthrising.org/blog/2018/05/19/migraine-drug-explosion-fibromyalgia-chronic-fatigue/

 

Post Ten. What’s My Future?

*Warning – This post touches on a very sensitive issue in the last two paragraphs, maybe especially so for someone currently experiencing bereavement. My intention is not to upset or shock. I am simply being honest about how my illness affects me, and what my future may hold, should a cure or treatment for ME never be found.

I read an article recently that had me bawling my eyes out for most of that day. What I read was nothing I didn’t know already, but every now and then I am reminded of the bleakness of my situation, and I become overwhelmed by grief, hopelessness and uncertainty. The article is about NLP (Neuro-linguistic programming) which I have no interest in, so I’m not really sure why I read it, but these two paragraphs were what really got to me…

“The most important, and possibly the most difficult task for a person who has ME/CFS, is to reframe exercise as harmful, something to avoid in the same way one would avoid anything which was known to make an illness worse. We do not think it is a sign of weakness for people to avoid smoking, alcohol consumption or sugary foods, let alone dangerous drugs. In fact we may admire the willpower of people who can do this. We do not think it is silly for people who have allergies, especially life-threatening allergies, to avoid the things which are a danger to them. Physical exertion is a danger to people who have ME/CFS; if doing something can make an illness worse for a short time, and doing more of it can result in permanent and severe disability, it makes sense to avoid it. But our culture’s worship of ‘exercise’ doesn’t make it easy for anyone to take on board that it can be actually harmful.”

“We need to be committed, determined, in our battle to get the rest our body needs to fight this illness. We need to fight against our natural impulse to be active, to go the extra mile, to be the first to offer help, to sacrifice our own interests – we need to fight against our natural impulse to pretend we are just fine when we aren’t – in fact we need to be really strong in the face of disbelief, criticism, people who ‘don’t believe in ME/CFS’. You know why we must? Because all of that is the kind of person we are, and the only way we are ever going to be able to be that person again is, right now, to give that up. The more we demand our right to act like an invalid right now, the sooner we may begin to regain, little by little, the ability to be that person. And unless we are very strong and very determined to act like invalids right now, we may find that we drive ourselves into permanent invalidity, permanent severe disability.”

“We need to fight against our natural instinct to be active.” This might be the most depressing sentence I’ve ever read. Because I know, when it comes to ME, that it’s true, and I hate it, I hate that it’s true. I’m trapped in a world where over-exertion (physical and mental) will cause my symptoms to worsen and possibly cause permanent severe disability. But if I never over-exert myself and stop myself from doing all that comes naturally to me, then my mental health will deteriorate. I already take steps to avoid over-exertion. For example… Sainsbury’s deliver the bulk of my groceries and my mum tops me up between deliveries. I pay someone to clean my home. My mum puts my bins out, changes my bedding and waters my plants. After a bath or shower instead of using precious energy to dry myself with a towel I put on a dressing gown made of towelling material and lie down in bed until I’m dry. I use a shower stool. I wear noise cancelling headphones on car journeys. But despite the many steps I have taken to decrease the use of my limited energy I know I still do too much. What else can I give up? Visits from friends and family? Phone conversations? Preparing and cooking my meals? Baking? Writing this blog? Writing emails? Texting? Social media? Brushing my teeth? Washing? Getting dressed? Putting face cream on? Filling my kettle? All these things can cause my symptoms to worsen, but they are also essential for my emotional well being, not to mention my personal hygiene. So what on earth am I meant to do?

This current wave of fear and confusion comes at the same time that I’ve started taking the use of my heart rate (HR) monitor more seriously. Many people with ME use a HR monitor to help with pacing, in order to avoid over-exertion, and the post-exertional symptoms that go along with that. The aim is to stay within our anaerobic threshold. The anaerobic threshold is the heart rate beyond which we draw on energy reserves we don’t have. The threshold is around about 60% of a person’s maximum heart rate. So I should aim to stay below a heart rate of 110 beats per minute. I wear a heart rate monitor and it beeps at me when I go over 110. Saturday was a bad day, I was in day three of a migraine and I was feeling very low in mood. On a bad day I can’t manage as much as on a normal, or better day. This was reflected in my heart rate. Every time I picked something up, like the kettle, my phone, a mug of coffee, I would hover between 130 and 140 beats per minutes. I reached 136 when I put my face cream on, and I reached 167 when I made my breakfast. I started writing a facebook message to a friend and within the first sentence I reached 135. I reached 154 when I started writing this. I started to think of my HR monitor as the enemy, and was worried it was only going to become a source of anxiety. I felt like I was going to have to become a slave to my HR and ‘behave’ by staying below 110, and to do that I would have to give up, well everything really. And that made me feel even more depressed.

After I read that article and after my first day of monitoring my HR I started to wonder if I should cancel all my upcoming plans. Should I cancel coffee with my mum on my birthday this week? Should I cancel my sisters, niece and nephew visiting the Saturday after my birthday. Should I cancel the plans I have for friends to visit me over the next few months? Would cancelling these things mean I was ‘behaving’, and doing what I should be doing to get better? Or, by attempting to enjoy what little I can of this wretched life am I destroying my only chance of recovery? If, in ten years time, and I’m no better, will I look back and blame myself for doing ‘too much’? Or will I understand that I needed to do those things in order to maintain my mental health? This has been going round and round in circles in my head. There’s no answer.

I personally value the quality of my life over how many years I live. If I could be guaranteed a healthy five years, with the same quality of life I had pre-ME, knowing I would die suddenly after the five years were up, I would choose those quality five years over what I have now. What I have now is possibly decades of simply existing in a sort of non-life, just monitoring my heart rate while waiting for the day I magically get better, or the day I die. A life in which I am mainly housebound, a life starved of human interaction, a life in pain with no relief, a life without hobbies, a life without being able to explore my interests, a life without the chance of ever finding a partner, a life without travel, a life without work, a life without spontaneity. Every now and then I become crippled by the fear, the confusion, the uncertainty, the just not knowing what to do for the best. The reason I don’t know is because no one knows, not even doctors know. When you have ME you are alone, alone without having a clue about what to do to get better, and this terrifies me. I can’t bear the thought of living to a grand old age no better than I am now.

There is however something I can do to regain control of my future. There is a way I can put my future in my hands. And it begins with completing my membership with Dignitas. I’m not saying I will seek their help with assisted suicide this year, or the next, or in the next ten years, but it comforts me that this is an option. I don’t want to live out the rest of my possibly long life as incapacitated as I am now. I value my freedom and my independence far too much. My life as it is now is simply not enough for me.

A ‘Swiss death’ is not a knee jerk reaction on my part. I do suffer from depression, a common side-effect of chronic illness, but my membership request to Dignitas pre-dated my depression. I have known since 2002, during my final year at university that assisted suicide was a possible option for me. That was when my dad was diagnosed with early-onset Alzheimer’s Disease. It was then that I started thinking about my own mortality, and how I would want to die if I ever got diagnosed with an incurable or terminal illness. I never thought I’d get that illness twelve years later. The Ron Davis quote that I shared in Post Nine seems appropriate here… “The good news is, these patients don’t die. The bad news is, these patients don’t die.”. Many people think the severity of an illness is based on if it can kill you or not. Yes, a premature death is devastating. But so is a long life, where the only promise is one of pain, suffering and isolation.

By the way, just in case it doesn’t go without saying. Obviously my preference is that that I regain my health (sooner rather than later) and I go back to living and enjoying my life. That is what I want more than anything.