Gorillas can be problematic

So today I was having a discussion with my friend about how her chronic pain gorilla sometimes wanders off at the most inconvenient of times. For example, right before she goes to the doctors, he'll sit in the car munching bananas and refuse to get out. And I realised that my gorilla does this sometimes too- for example, if I'm about to see a friend, and I've told them I'm not doing too well, my gorilla will beat me up something rotten before I see them and then wander off, so my friend's reaction is 'well you're not that sick!'

It can be really frustrating when people can't see our gorillas, because then they don't understand how unwell you are at times. Very few people see me at my worst; lying in a darkened room unable to sit up in bed, struggling to eat or drink or think or move, sometimes even to breathe, in agony, only able to scream silently because the noise hurts so much, wondering if I'm going to die. No, barely anyone sees me when my gorilla is beating me to a pulp, jumping up and down on the bed on top of me, pummelling my head with his big gorilla hands. No, the people that choose to believe my gorilla even exists usually only see him when he's on his best behaviour, or when he's wandered off for a while.

People of the world, know this: Just because things look okay outwardly, does not mean there is nothing going on inwardly. Just because our gorillas aren't playing up something awful, doesn't mean they don't exist. One good day is not recovery or remission, and though a few lucky ones recover from chronic illness, the majority don't.

This isn't about negativity, it's about realism. Some people have such warped views in relation to illnesses like ME, yet are so supportive of people with other, better known, chronic/terminal illness such as cancer or MS. Why do we treat some disabled and ill people so differently to others? To me it makes no sense. Now I'm not saying I'd rather have another illness, I just feel there is some equality required.

Here are some quotes which might change your opinion of ME and its severity:

• “The people with Chronic Fatigue Syndrome are in fact profoundly ill. They are as disabled as anyone with AIDS, with breast cancer, with coronary artery disease.”
  William Reeves from the CDC
• “I split my clinical time between the two illnesses (CFS and HIV), and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
  Dr Kilimas
•  “ME/CFS is actually more debilitating than most other Medical problems in the world, including Patients undergoing Chemotherapy and HIV Patients (until about two weeks before death.)”
  Canadian ME/CFS Consensus
• “I have treated more than 2500 AIDS and CFS patients over the past 12 years and my CFS patients are MORE sick and MORE disabled, every single day, than my AIDS patients are, except in the last two weeks of life!”
  Dr. Marc Loveless
•  “Research has shown that M.E. has been found to be more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or haemodialysis. It is comparable to end-stage AIDS, i.e. to how ill and disabled an AIDS patient is 2 weeks before death.”
  Hooper and Marshall
• “Can you imagine not sleeping for 48 hours, then running a marathon with a hangover and a dose of flu? That’s how it can feel to have ME.”
  Ceri Isfryn
• “My son has said that he would rather have a disease like cancer or diabetes that is not only treatable, but that people can understand….. I felt like a horrible mother for “wishing” that they would find “a nice simple brain tumor” when they did his MRI of the brain.”
  Dr Donnica

So next time you judge someone because their gorilla is having a good day, or tell them they're not that sick, think again. Behind closed doors they're fighting a battle with their gorillas on an hourly basis. They may not tell you they're struggling because they may not want you to worry, they may feel guilty for complaining all the time, or even just feel guilty for being ill in the first place. They may feel ashamed of their gorilla and tell you he's been behaving well recently, because they don't want you to know the cold hard truth for fear you won't believe them, that you'll judge them, blame them, or make ridiculous recommendations or suggestions on how they can get better. Instead, be kind to them, give them space and time, if they don't keep in touch as well as you'd like them to, don't worry, they're probably just too exhausted to communicate. Also, try not to express your concern over their well-being, as this can cause feelings of guilt within a chronically ill person; feeling bad for making people worried about you is the worst feeling. Besides, what did worrying achieve anyway? If you really want to help them, don't tell them you're worried about them, but instead encourage and build them up, perhaps get them something that make their dark days seem a little brighter. Treat them as you would any other human with a debilitating illness, and try not to aggravate their gorilla too much!

Hope this has helped some of you,
Alley-Cat

P.S. if you're wondering why I keep mentioning gorillas, read either of these posts:
Disability is like having a Gorilla in your house
Frustration and Acceptance (with added gorillas)

P.P.S. I found the quotes through this blog, you should go check it out:
Living with CFS

© Alice Daley 2014