17. Apr, 2018

Shallow depth

I have to say, today I’m wondering if it’s all worth it. I’ve just finished reading an interesting article on ME/CFS and the toll it takes on its sufferers due to the functional limitations it imposes, and the effect it has on society due to the loss of productivity, and I have reached the conclusion that the truth of the matter is, no one really cares.

I also have to say that I have never at any time in my life, felt more invisible than I do at present. While you all scroll through your Facebook feeds, being entranced by ridiculous and nonsensical memes, people are suffering. And I wonder what drives that level of indifference. Is it fear? Fear that on some level you might be expected to become connected? Fear that you might come face to face with the harsh and painful reality that we are all mortal? Or fear that you might have to give of yourself in some way.

In my view, society has become so shallow you couldn’t drown if you fell in it face first. Where have all the real conversations gone and why do many people run at the first sign of realness?

I recall once having a chat with a person I thought was a close friend, after I had recovered somewhat from a severe episode of depression, and he told me he had felt uncomfortable around me as if I were some sort of pariah and it has taken me many months and years to work out, that although I had changed in some ways, his fear said more about him than it did me.

Perhaps he thought my depression was a contagion, and exposure through a mask or avoidance was the safest option. (Little did he know I was the one who had been wearing the mask for years). Evidently, my illness became my death to him, as I no longer see him. At the time I valued his honesty, and still do, probably more so than those who have just dropped from my life as if our friendship had never existed.

I am now of the mindset that acute illness attracts empathy, chronic illness derision. It creates compassion fatigue, and it’s much easier for people to believe you no longer exist than send a message saying, “Hi buddy, how are you doing?”

But let’s be clear here, I don’t want sympathy, nor am I seeking attention. Nothing about the chronic state of my health has been a choice. If you ever really knew me, you would know I have loved living. My family is everything to me, my hobbies, including writing, have all revolved around the great outdoors. I was the instigator and planner of all our family camping holidays, all while trying to negotiate a chronic health condition, but I managed it along with a career in radio, one brilliant husband, two handsome boys, several Rough collies and an acre in the country, which has now frequently become my prison.

My career, I have lost. My financial independence is now limited to a self-funded invalid pension, my physical mobility restricted to the bare minimum, my brain is frequently clouded in a thick fog, I receive no government recognition for my CFS disability, my medical expenses are becoming prohibitive as are my pharmaceuticals and no subsidies are available to me.

Friends dwindle and drop away, contact with most is limited to texts and messages, but fortunately, I have a supportive family and therapist, and a few very special friends who have stuck by me through it all, and you know what troubles me most…I am one of the lucky ones with this disease.

About 18 months ago due to my increased isolation, loneliness and desperation to find support and answers to the conundrum that is ME/CFS, I began a local support group. It has grown exponentially over that time and now has over 130 members needing companionship, two of whom are doctors seeking to learn more about this disease.  And the stories I read of people’s financial hardships, their lack of validation from the medical fraternity, their dismissal by the Federal Government and its National Disability Insurance Agency and Scheme as being malingerers and not qualifying when some can’t even get out of bed, is not only heartbreaking, but is a fundamental disregard of our basic human rights. Some members have very little financial, emotional and physical support, they have lost careers, relationships, and friendships and to some, the group has become a lifeline.

So, I ask you, as friends in a busy society, how can this be ignored? How can a disease, with a cost so high that people are taking their own lives, continue to be swept under the carpet by ignorance and apathy? How long will you let this go on? What will it take to be heard?

It has come down to us, through necessity, to share our collective might by becoming an army of bedroom battlers, keyboard warriors, and ailment advocates and I reckon, it’s a pretty sad state of affairs when the sick have to go into battle to fight the establishment at every turn, instead of using their precious energy on trying to improve the quality of life they have left.

But I will push on, almost as if to defy naysayers and for those whose voice is softer than mine. I often wonder whether this daily fight is destroying my soul but then out of the darkness a shaft of light will appear.

I see a therapist frequently and I will occasionally joke with my family when the odd dinner table banter leads to an interesting topic, “oh that is going to the doc on Tuesday, I am taking that to the doc” and my son piped up the other day and said “ I love your doc, Mum” and on asking him why, he replied, “because she has kept you alive Mum,” and nothing can top that.