Janet has lived with Lichen Sclerosus Disease a progressive, autoimmune disease for which there is no cure since 2007. She manages with a daily dose of morphine but still experiences terrible pain, disrupted sleep and very limited ability to leave her home. Janet has a large, loving family, a great sense of humour and finds ways to stay positive despite her condition but Janet is motivated to help get Bill C-7 passed so she can access a medically assisted death. She has connected with her local MP and has shared her story with many members of the Senate in hopes that it will help them understand the compassion that Bill C-7 will bring to the many Canadians who suffer with intolerable pain every day.
I am a 69 year old woman, and after many discussions with my doctors and my own research I have a good understanding of my medical conditions. For 37 years I have had rheumatoid arthritis, and am now on a biologic infusion every 6 weeks, 10 years of kidney stones, where I have thrown up, passed out and been hospitalized and osteoarthritis and fibromyalgia which is all to state that I know what suffering is.
In 2007, as a result of a biopsy, I was diagnosed with Lichen Sclerosus Disease a progressive, autoimmune disease for which there is no cure, only treatments. This chronic inflammatory disease can appear anywhere on the body but since 2008 has settled in my anal and genital areas. When I open my eyes in the morning the first sensation is pain and itching,
I wear only dresses because underpants irritate my skin. During a doctor visit I was coughing and got up to get a drink and urinated on her office floor. My daughter cleaned it up.
Over 13 years, I have used special compounding prescriptions, and prescription ointments such as Betaderm, Protopic, Ratio-Clobetasol, Pimecrolimus (Elidel) and a numbing cream to reduce the severity of the pain and itch. I am monitored by my physician and now take daily taking morphine and Lorazepam in order to survive the day. I also have regular counselling.
Common Symptoms which become progressively and intensely worse are:
- Redness and raw tissue
- Pruritus - Itching that is so severe I want to die
- Severe pain where I am moaning like an animal
- White patches which is skin that has atrophied
- Thin skin which tears and bleeds easily
- Ulcerated and blistering lesions
In the morning before I shower, I wait for morphine to dull the symptoms before the water touches my genitals. A flare up can happen most days and leave me exhausted, crying and feeling alone dealing with pain I believe no one else can understand. Severe flare ups cause excruciating pain and bleeding both from the genital and anal area. I have the shakes and weakness in my legs and cry from pain and frustration. Sometimes I cannot walk for a while after a severe flare up because my skin is so raw, like a bad burn. Recently my OB/GYN, was so concerned at the severe decline of my tissue that she took 4 tissue samples to biopsy for cancer. They came back negative. I hoped for cancer because then I could receive palliative care.
I have some shrivelling and dying tissue but as time passes the atrophic tissue will become more severe and can cause genital lesions to eventually obliterate the labia minora and perianal area to also shrink.
The initial signs of vulvar dystrophy are patches of dry, thickened skin accompanied by persistent itching. The patch may be red and swollen at first but later becomes opaque white. As the condition progresses, the abnormal white skin expands to cover all or most of the vulva. The patches contain clusters of minute white lesions that blend together. Grooves and cracks and blood from ruptured blood vessels may appear. The skin also becomes very thin and tears easily from the disease and the use of topical steroid ointments. While LS is not a deadly disease in itself, suicide is the most common form of death. I asked my specialist if patients have talked about suicide with this disease and she said yes. My genital and anal area will be completely destroyed over time. I do not want my genital or anal tissue to be cut away which is sometimes done through a vulvectomy.
I try to stay one step ahead of this never ending assault on my body. I see my tissue being destroyed and I am afraid to go to sleep because sometimes the flare up (severe itching, pain, bleeding and burning) starts in my sleep. Panic sets in and I hurry to the bathroom and run cold water, while I take my painkillers. I place a cold wet cloth on my genitals, run to the kitchen to fill a bowl with ice cubes and cold water and sit on the couch which is covered with a plastic pad and towels to absorb the melting ice. I sit there with my ice for a few hours and watch TV to take my mind anywhere else and wait for the painkillers to work. This can happen many days or nights a week. The ice tray must be filled with ice cubes at all times. My anal area can be so itchy that I want to rip my skin off and yet I know this would only cause more bleeding. Eventually I am so dopey and sleepy that I go to bed with my bowl of ice on the bedside table and continue with the ice-cold cloth between my legs until I fall asleep. I have plastic and towels in my bed so my sheets don’t become soaked. It is days of continuous suffering after a flare up. Mostly I just dope myself up enough to sleep. This is the worst pain I have ever experienced.
If I go anywhere, l bring a small ice pack in a cooler, thermos of cold water and cloths if I have to find a washroom quickly. I go out very infrequently now. This is a very personal and private issue and difficult to discuss with anyone but if I had colon or breast cancer it would be more tolerable to talk about.
All humans and animals have a primal urge to survive. What then brings a person to prefer death? Constant pain eats at your soul. It destroys. We start to question. Do I have to be doped just to exist? What is considered an acceptable amount of suffering? How much is enough to satisfy those who can’t or don’t want to understand? There is a limit to one’s endurance. It’s not that we want to die, it is that the pain has taken away the will to live. I am not the same person I was all my life. I am losing myself.
Thoughts of death come frequently but I fight them off over and over. After many discussions with my family physician, counsellor and specialist they have all agreed that I am not depressed, that I am a mature and intelligent woman who is in severe pain and that I have given this a great deal of thought. I am extremely fortunate that my immediate family members do not wish to see me suffer more than I am able. I have lived a good life and have no regrets at this point, nothing left that I feel I have to complete. My children and grandchildren know how much I love them but I am ready to be at peace.
Finally, I love my family so much and do not want suicide to be my legacy for my children and grandchildren especially when I have fought so hard for so long. I would be grateful to have medically assisted death with compassionate medical personnel and with my loving, caring family surrounding me.
As I write this piece, Bill C-7 is set to be reviewed by the Senate. My message to elected and appointed representatives is this: You must remember that the people waiting for Bill C-7 to pass are intelligent, thoughtful people who are suffering a life worse than death. We call for mercy because suicide is not a merciful option. The passing of Bill C-7 would be the most compassionate and thoughtful gift that could be provided to those of us who are suffering. You have the power to give us peace, please do this for us.