For ten years I worked in the psychology field under many titles and with a wide variety of individuals. I was a group home worker, team leader, special needs teaching assistant, mental health worker, addictions and crisis worker, psychiatric rehabilitation worker and an early intervention worker. Although these jobs did not always pay the greatest I was not working to merely collect a paycheque, I was trying to make a difference in these people’s lives. I worked with a variety of individuals some that were deaf or visually impaired, handicapped people, children with special needs ( behaviourally challenged, ADHD, autism, etc.), persons with addictions, bulimics, anorexics, the sexually and or physically abused, homeless people and a few I forgot to mention.
My duties were many: some required heavy lifting, house cleaning, counselor, confidante, bookkeeper, grocery shopper, cooking, etc. In essence, I was kind of a Mother to these people as I cared for their needs psychologically and physically.
The satisfaction these jobs gave me was enormous and at the end of every workday I would go to bed happy and content that I was being of service to people that really needed it.
Now, a year or so later I find myself alone, trying to look after myself as I did for so many others, not so long ago. This past May I was diagnosed with three conditions ( Fibromyalgia, IBS and Rheumatoid Arthitis) that have substantially reduced my energy levels, caused me pain on a daily basis, also limiting what I can do physically. I was living in the state of what I call ” I am invincible” for over four years, being told by my doctors that I was just stressed out. I believed them and proceeded to keep working but less hours than I had been working previously. I started meditating, even walking daily with my dog Molly. These seemed to be working fine, until one day I was simply too exhausted to get out of bed and when I finally did try to get up I was gripped by dizziness and fatigue. I even blacked out once in public and once at home. At this time my doctor assumed it was a sinus infection and after three rounds of antibiotics I did not feel any better. I was told it was then a virus and I demanded to see a rheumatologist who concluded after examining me and x-ray results that I did not have a mere virus but Fibromyalgia, IBS and Rheumatoid Arthritis.
I researched what, if any, services were available to people like me that are not over the age of 65 for primarily the house cleaning and found that there are not any unless you qualify for AISH. This was not a benefit I was able to qualify for as I am not deemed to be that bad according to them and rightfully so. Those benefits are for people that are often dying or have much more serious conditions than you have. ( quoted from an intake worker at the AISH office). Medical EI. is not an option either in my case.
I have spent nine months looking at hiring people privately to assist me with house cleaning so I might be able to better manage my medical conditions. What these people expect to be paid is not within my financial means most of the time or others cannot commit to assisting me in the long-term while others never even made it to the interview to meet with me in person.
Many people that know me are aware that I do not give up very easily.
My journey has led me to the writing of this blog. After speaking to many professional women in the helping professions who are no longer working or are working reduced hours, struggling with Fibromyagia I have found we are all in a very similar position. It has become a common joke among us as to who is to look after the caregiver when the caregiver needs help? If we cant get help now and our conditions will eventually become worse as we get older, then what?
I spoke with a nurse about what do I do with this Fibromyalgia as I basically run the household, who is going to do it? She laughed at what I said and told me that most women that have Fibromyalgia always ask that. How will the husband and kids manage now? How will my close family members deal with this? Who is going to look after the sick aunt now or how will we survive without the loss of my income? Yes, this condition is a major life change but the lack of understanding and support of one’s family is far more crippling. If you have been the one that did it all, how can we expect them to do it? Or even be taken seriously now.
As women, we are nurturers and helpers, not to exclude men here either, as there are many also trying to deal with their Fibromyalgia that have cared for others with similar work experiences as myself.
The message we are all receiving here is you have this, and now deal with it. If I would have had the same attitude where would the people I helped and cared for be today?
I am not bitter about any of this but it does concern me, where is this help for me, and the next person, and the next?
I am blessed that I do have a husband that works more now to support us but often at the end of the day he is not in any state to help me at home either. My family tries to do what they can but not consistently either.
I have decided that the Fibromyalgia sufferers need a voice, an advocate, and I am going to do exactly that with my business. I need to expand Asgarda Coaching and Mentoring Services to include advocacy, as we need to attain some rights just like any other person dealing with any other condition. We need to educate people on what we deal with. Just because we look good on the outside does not mean we are not suffering on the inside.
The government and health care systems in our country need to acknowledge us at some point, why not start today!
Maybe I will be the ripple that causes a wave.