Post Nine. Why I Write This Blog.

I came across a blog post from The Mighty this morning and I urge you to please read it. It explains so well why someone living with chronic illness might share so much about their illness on social media. I’m aware I might have Facebook friends who think I’m oversharing, or attention seeking. I’d like to think that anyone who knows me well enough would know that this is not the case. I wonder if people think that I’m too ‘negative’. All I can say is, I’m realistic, I’m honest, I don’t exaggerate and to be frank, if anything, I probably downplay the reality of my illness. I don’t share everything. I possibly use humour too much, to make you feel less uncomfortable. And so begins why I share so much about my illness…

ME is a serious and debilitating illness, I want you to understand that.

It is unfortunate that the reality of living with ME is really very shitty, and that’s putting it mildly. So when I’m being honest about my illness, it’s going to come across, as guess what, really very shitty. ME is an incredibly debilitating illness. For moderate to severe patients (I’m on the severe end of moderate), living with ME is said (by many experts) to be “like living with late-stage cancer, advanced stage AIDS, or congestive heart failure, for decades”. ME is unfortunately such a massively misunderstood illness though that those comparisons may have shocked you, or even offended you. I am absolutely not downplaying the horrendousness of AIDS, or cancer, or congestive heart failure or any other serious and life-threatening illness. I am not looking for sympathy. I am trying to make you see ME more clearly for what it is. If being honest about my really very shitty illness is ‘negative’, then so be it. (Why is negativity such a bad thing anyway? Emotions and feelings can come in both positive and negative varieties. I personally don’t feel it’s healthy to repress what I’m feeling, I let it out, I ‘feel’ it, good or bad, and if it’s negative, I work through it, and eventually move on, and this will sound really clichéd, but maybe I’ll have learnt something from it.).

Not convinced that ME is that debilitating?*

I split my clinical time between the two illnesses (ME/CFS and HIV), and I can tell you if I had to choose between the two illnesses I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.”—Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

“They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy…” – Dr. Nancy Klimas, CFS researcher and clinician, University of Miami (2006 Press Conference)

“In my experience, (ME/CFS) is one of the most disabling diseases that I care for, far exceeding HIV disease except for the terminal stages.”—Dr. Daniel Peterson (Introduction to Research and Clinical Conference, Fort Lauderdale, Florida, October 1994; published in JCFS 1995:1:3-4:123-125)

“We’ve documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions.”– Dr. William Reeves, former CDC Chief of Viral Diseases Branch

“[ME/CFS patients] are more sick and have greater disability than patients with chronic obstructive lung or cardiac disease, and … psychological factors played no role.”—Dr. William Reeves, Chief of the ME/CFS research programme at the US Centres for Disease Control (CDC) (Press Release AACFS, October 7th, 2004).

“[ME/CFS patients] feels effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University (Congressional Briefing 1995)

The good news is, these patients don’t die. The bad news is, these patients don’t die.” – Ron Davis, California-based geneticist whose son has ME/CFS

To spread awareness.

My blog started because I wanted to raise awareness of ME. I know that there are many people in the world, including health professionals who do not take this illness seriously. I also know there are people in my life who do not take this illness seriously. Mainly due to being uninformed. But also, my friends and family (apart from my mum) only see me when I’m feeling well enough to see people. So of course you may see me and think, ‘ME doesn’t seem that bad’. Unless you are my mum, you have never seen me on my worse days, or possibly even my ‘normal’ days. You have only ever seen me on the ‘better’days, the days that I can scrounge up a bit of excess energy to have a conversation (I had no idea before ME how much energy was required to hold a conversation). You also see me putting on an act, I often pretend to feel better than I am. But also, when I am with people, I don’t want to go on and on about ME, I’m already living it, I don’t want to be always talking about it! It’s also an invisible illness, you can’t see my pain, my exhaustion, my weakness, my dizziness, my brain fog etc. You also don’t see me in the hours or days after your visit, when I am suffering for it, when every inch of me is in pain, when I don’t have the strength to hold my phone, when I’m crawling because my legs are too weak. So I am probably partly to blame for the people in my life not knowing the reality of my life with ME. The problem is, when I am feeling too unwell for visitors, I simply cannot have visitors. And the majority of my days are spent being too unwell for visitors. I recently had someone ask me how I was doing. I told them ‘really weak, achy and slowed down, like there’s an elephant sitting on my shoulders’. In reply they asked if I had a bug, or if it was an extra bad ME day. But no, it was a very normal, nothing out of the ordinary, run of the mill ME day for me. After two and a half years of this illness, people still struggle to understand. I hope this blog will help with that. Also, and most importantly, no one is going to fund research for an illness they aren’t aware of.

It gives me a sense of purpose that I don’t get elsewhere.

It gives me purpose and a sense of accomplishment. My purpose before I became ill was to help people. I worked, alongside an army of incredible volunteers, for a homeless charity redistributing surplus food from the food industry to those who needed it the most. I supported people with all manner of obstacles and difficulties in their lives, people excluded from their families and their communities, on their life journey. I could see how I was contributing to the world, to my community, to people’s lives. I could see the difference I was doing. That is what I did for a living. It was a privilege, and I was working with some of the most inspiring people I have ever met. In that job I had found my vocation in life. A friend of mine at the time told me I was her hero, that she was so proud of me. I now haven’t been to work for over two years. I no longer contribute. I’m not helping anyone. I have no purpose. I don’t feel that I have anything to offer anyone. I’m not making anyone proud. That was until I started receiving some really wonderful feedback about my blog. Then I got my first message from a stranger. A stranger who was newly diagnosed with ME, and my blog had helped them feel less alone. For the first time since I had been off work I felt I had accomplished something, something that had helped another person, and that makes my blog all the more worthwhile.

I have something that is mine, that I am in control of. It makes me feel a bit more ‘normal’.

My life is ruled by my illness. ME affects every single aspect of my life, there is not one thing that it hasn’t had an impact on. Daily tasks that were once so easy, so natural, are now mammoth tasks of endurance. All of my decisions these days revolve around my illness, I no longer have the freedom and independence that I valued so much. I’m not in charge, ME is. But my blog is all mine, I control the content, I control when I publish a post. Of course ME dictates when I can write and for how long, and it always punishes me afterwards. But I can bitch about it all I want in my blog. Mwa ha ha ha. 😉

It helps with the isolation and loneliness.

Back when I had a life (pre-ME) I would occasionally cherish having a few quiet days to myself, knowing I wouldn’t see another human until I was back at work on Monday. However, having two (plus) years to yourself when it is not through choice, when it is forced upon you through illness is horrible, and boring, so mind-numbingly boring. It is frustrating. It is upsetting. It is depressing. It is lonely, very very lonely. The isolation, I have found, can feel as bad as, if not worse, than the illness that brought upon the isolation. This illness prevents me from keeping in touch with people with the frequency and regularity I used to (I need both the required energy and a certain level of cognitive function to do that). And that results in people not contacting me as much as they used to. To go from being surrounded by people every day at work, the gym, the pub, the supermarket, the bus, or a restaurant, a cinema, Leith Walk, etc, to being almost housebound so very suddenly has been heartbreaking for me. It is incredibly difficult to cope with. Like in the post I shared from The Mighty, my world has become smaller and smaller, and I am alone most of the time. We need human contact, and my social media accounts, and my blog, have become my main source of interaction with other humans. I’m so grateful to at least have been struck down with a long term illness during the age of social media. When I share something about my illness on Facebook, whether an article, or one of my blog posts, I hope for ‘likes’ or comments. Not to feed my ego, but because it shows me that I am being heard. At least one person, for a short time, was thinking about me, and I feel a little less lonely, a little less forgotten and a little less invisible. And when, like me, you are so starved of human company, that one ‘like’ can keep me going for the rest of the day.


Dr Nancy Klimas. Readers Ask: New York Times Interview

Dr Nancy Klimas, Dr Daniel Peterson, Dr William Reeves and Prof Mark Loveless quotes

Ron Davis quote

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