Recently a close family member has been diagnosed with ME. It's an awful illness that is stealing her youth.
She doesn't speak about it because of the stigma and lack of any available treatment or research into possible treatment.
She has resigned herself to having to live with this condition, probably for ever. She went from being active, fit and doing a job she loved to being unable to read, drive, hold a conversation without losing the thread of what she was saying. This happened, quite literally, overnight.
When she was first diagnosed she learned that many people with this condition find themselves so ill they are unable to get out of bed for years. She is lucky in that she is not as ill as many people are. But she doesn't know if she will ever again be able to hold down any full-time job, let alone one that allows her to use the skills she has worked hard to develop.
It's an invisible illness.
No-one sees her when she is feeling really unwell. She stays in her room, with the lights dimmed, and the heating on, whatever the weather, wearing the big jacket she no longer needs for mountaineering. She has all the kit for this illness, hats, gloves, down jackets and sleeping bags - she never thought they would be used for this.
Most people have no idea how ill she is, she only sees them when she is well enough to power through on adrenaline.
She doesn't look ill. People are constantly telling her how glad they are she is better when she is well enough to socialise. She has stopped telling them she isn't because they can see for themselves that she looks fine and so they assume she is either lazy or a hypochondriac.
But the energy used on not looking ill costs her days as she recovers enough energy to function again. She often finds herself without the energy to stand up for long enough to have a shower.
So AIBU to wonder how many others suffer from this condition and to be outraged that we are not researching like crazy to find the biomedical causes of this illness that is stealing the lives of so many?