Tuesday, May 8, 2012

The Emotional Burden of Invisible Illness and Disability

Further to my last post, as May is Ehlers-Danlos Syndrome (EDS), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia and Arthritis awareness month, I present to you another blog post on my invisible disability =). 

I suffer from several conditions. I was first diagnosed with post-viral chronic fatigue when I was 11 years old. My symptoms improved after a few months, and I thought I was over the illness. However, my symptoms returned when I was 14. This time, I was diagnosed with 'idiopathic chronic fatigue'. Again, my symptoms improved (although, it took a lot longer than it had the previous time). At the age of 18, I became sick again with this most recent bout of the same set of symptoms. I was diagnosed with ME/CFS around 7 years ago, and have not had significant improvement this time around.

In 2010, I suffered my worst symptom flare to date. It was shortly after this that I was diagnosed with fibromyalgia and Ehlers-Danlos syndrome (I had been showing symptoms of EDS since I was in primary school, but had never been formerly diagnosed - it was on file as a query). Also, osteoarthritis (thought to be secondary to the EDS) began to show on bone scans of my hips, knee and foot. 

Basically, because of the combination of these illnesses, I spend every day in a lot of pain, with severe fatigue, and with joints that are prone to subluxation and dislocation at the slightest touch or movement. On any given day, I can also have a combination of poor co-ordination, memory and concentration problems, gastrointestinal problems, vision disturbances, poor balance, nausea, dizziness, involuntary muscle spasms/twitches (that my cat hates - she stares at my twitching limbs! It is funny =D), headaches, flu-like symptoms, and other unpleasantness. 

My illnesses and resulting disability can be difficult for others to understand because they are largely invisible. People who do not see me daily/help with my daily care are usually largely unaware of the severity of the pain, sickness, fatigue and physical and cognitive impairments from which I suffer, and frequently assume that I am 'cured' because they see me for a couple of hours on a good day. Unfortunately, this is not the case. 

People with invisible disabilities mourn the loss of their freedom, ability, and independence, as well as the loss of their old life. We mourn our former dreams and plans, and our lost potential, and go through a grieving process for our former selves. I know that personally I spent several years in denial – thinking that the doctors had misdiagnosed me, and that I would get better by the time I had finished my university course. Unfortunately, this didn’t happen. Feelings of anger and depression, and the realization that this wasn’t going to go away followed. I felt that I was a huge financial, physical and emotional burden on my family, and that I wasn’t worth the resources it was taking to look after me. 

In the last few years, however, I have really come to accept my disability, and find new things that I can do within my new-found limitations. I now realize that I am a worthwhile person with many talents and intelligence, and I want to make a positive difference to the lives of other people with invisible illness through being there to support my friends and by raising public awareness of our plights. It is unfortunate that many of us do not have the energy to speak up and advocate for ourselves. Now that I am receiving proper treatment, I do – so it is for the benefit of all of us that I wish to speak out about invisible disability, and hopefully gain understanding from as many healthy people as possible!

Anyway, aside from that intriguing epiphany, getting through the emotional turmoil of being told you have a bunch of long-term and permanent diagnoses is extremely difficult – both for me and for my family. My ability to cope varies on a day to day basis. Luckily, I have a strong and supportive network of understanding family, friends, Twittering spoonies, and medical professionals who respect and understand what I am going through, and who can share my little triumphs and halve my woes with me! <3

~Adrielle =)