I have a friend who has been completely bedbound for the past 8 years with severe M.E. J is by for the worst case most professionals will of ever come across including specialists and she been lucky to pull through several life threatening incidents all caused by M.E. Once she regained her speech and use of hands she started campaigning to raise awareness. J posts her journey on Facebook sharing her good moments and then the payback that comes from them. I would say understanding payback is the number one key to understanding M.E.
This week J achieved something she has spent 8 years working towards and posted a video of it on Facebook, later she posted a selfie showing the payback. Someone commented saying that these depressing selfies aren't doing anyone any good and J clearly needs therapy for her depression, then maybe other treatment could work. At this point I should add that J doesn't have depression. Replies backing up J's positive frame of mind were met with 'but depression is an illness too'.
Lots of people with ME get offended when people suggest they have a mental health problem or when professionals try to refer them for phycological help. The response often leads to people with MH problems thinking the ME patient is being insulting either by dismissing the suffering of problems like depression or that having MH problems is something to be ashamed of. This isn't the case but imagine...
You fell down the stairs and heard a snap, your leg is agony and you just know it's broken. You head straight to A&E in pain and wait to be seen. Finally a doctor comes along, offers you some paracetamol and quickly glances at you instead of doing a full examination, they then say someone will come and be with you shortly. You wait thinking your going to be taken to X-ray and then have your leg put in plaster. After a while a phycologist turns up. They talk to you and are sympathetic, they say they know how hard it is to have a painful leg and they want to help you. You are told you will be placed on the waiting list for 6 sessions of counselling. Your shocked and ask about an X-ray, you explain you heard the snap, that your leg doesn't look right and your just met with a sympathetic smile and a nod before they leave. Your confused but hold your breath waiting for the next person to see you, they come in with some paperwork and announce your being discharged. 'But what about my leg, I can't walk, how will I manage?', your pointed towards the Red Cross who will lend you some crutches until your at the top of the list for counselling.
How would that make you feel? Now for the comparison to severe M.E. Imagine you fell down the stairs and heard a crack, you look down and see a compound fracture-the broken bone is sticking up through the skin. An ambulance takes you to hospital but all that happens is the same as above. Your loved ones plead with the discharge nurse, they show information they have found saying that it needs to be operated on and the longer it's left the higher the chance of serious problems become. Again your met with a sympathetic nod and told that there is a support group led by a phycologist where you can talk to other people with broken bones protruding through the skin, if your loved one argues any more then therapy for them will be considered too. You have no choice but to go home, scared and worried for your future.
This scenario is happening all the time to so many people, it's wrong and that's why it makes people with ME (and other conditions) twitchy when it's suggested they have MH problems. The situation is dangerous and ironically can cause long term emotional scars. The flip side to this too is there are a limited amount of therapy places available and instead of being used to help those lost deep in depression they are being wasted by being pushed on people who don't need them.