We recently asked Saskatchewan residents, Danika (31), former care worker, and her mother Sherry, about their experiences being directly affected by multiple sclerosis (MS), the obstacles they face as a result of the disease, and what the government could do to step up. Danika, who was diagnosed with MS in 2017, faces multiple road blocks due to her MS, but her mother stands by her side as her biggest advocate. After MS snuck up and “rocked Danika and her family’s world”, here’s what they shared with us.
What was it like to tell your family and friends about the diagnosis?
Danika: I couldn’t tell anyone. I was too upset. I also didn’t want to tell anyone was because I didn’t want to add further stress or worry to anyone’s life. My mom let everyone know. When I finally told some friends, it was difficult not to break down and cry.
Sherry: I basically let everyone know about Danika’s diagnosis, since she was too upset to do so and didn’t know what to say. She wanted to keep it quiet at first – she was worried about people’s reactions and judgment, and still is.
What are some of the largest obstacles you’ve faced as a result of MS?
Danika: The largest obstacle is the inability to work full-time which affects my finances, and my inability to be completely independent and support myself. My capacity to walk, stand and maintain my balance has been impacted. At this point, I can’t walk more than a block without my knees starting to buckle and weaken. I can’t sleep properly due to bladder issues during the night – having to get up to pee several times a night is frustrating. In June 2016, I turned to self catheterization. Oh, and finding affordable housing in Regina was difficult; I was on a list for over a year.
Sherry: My daughter has lost the ability to make a living and fully support herself. Due to brain fog, pain, fatigue and depression, she can only work so many hours in a day which puts an automatic cap on her lifestyle. As a result, there’s only certain types of work she can do. She was on a wait list for a year with our areas housing authority and finally qualified for an apartment.
How do you feel about your future/the future of your loved one while living with MS?
Danika: I feel unsure about my future. I try to remain as positive as possible, but this disease is very unpredictable. Because of that, I don’t really have the ability to plan long term.
Sherry: I feel that Danika’s future will have hope if she can get and keep appropriate housing, income and employment supports. I keep hoping that research will bring on better treatments and maybe even a cure. I refuse to give up, so I encourage her and advocate for her a lot. We can’t let the disease win.
What do you feel is the most important priority our federal government needs to address in terms of helping people affected by MS: Employment Security, Income Security, Access, or Accelerating Research?
Danika: All of them. My ability to work full-time and earn a living has been completely affected with no real end in sight. I’m doing some casual part time work, but I need help to fill the gap. I recently applied for CPPD and feel I was misled in getting my hopes up with that program. I live well below the poverty line but apparently make too much to qualify for any support programs. I feel like I’m trapped by my loss of ability to work full-time, and a system that has unreasonable income caps for anyone who’s trying to live independently and frugally. I feel income security is by far the most important in my case.
Sherry: Income security is number one. People like my daughter can’t work full time, even if there is employment security. She needs enough money to live independently in affordable, decent housing. I feel that most employers understand, and under the law, they have a duty to accommodate, especially in Saskatchewan. However, we cannot let up on this because there still seems to be stigma out there against people with disabilities. Access is also very important, but many provinces have regulations around this now. Danika’s apartment is very accessible, and most commercial/retail locations are accessible. I believe the government should put a priority on income security so people with MS can live better and alleviate some of the worry that comes with the disease. They shouldn’t have to suffer for acquiring a debilitating disease. I’m suggesting an “MS Transition Support Program” that fills the income gap. This could be temporary while suitable employment or work is found, or permanent as a person transitions to living with the limitations of MS.
What would you say to a member of parliament if you had the chance this federal election?
Danika: Please start making MS a priority. Please stop making the invisibility of the disease an excuse to not do anything significant or urgent. We suffer more than you realize. Our needs are urgent and real (especially financial) and we want to live as well as possible with a disease nobody can explain, understand or yet cure.
Sherry: MS has rocked our family’s world, and we are continually adjusting to the many unknowns on this journey every day. Oftentimes I feel very alone in this struggle to get supports for my daughter. Why should I have to go to my MP’s office to get clear answers on Danika’s CPPD application? Politicians would have to live like they, or one of their loved ones, had MS for a day, a week or a month to really experience what people go though. I think their lens would change completely, and they would better understand the urgency and importance for change. I never knew anything about the invisible and almost insurmountable challenges of MS until my daughter was diagnosed. And if my daughter has suffered so much and it’s been so hard for us, what about those people who don’t have strong personal advocates and family support? We can do better.
Please provide an example of what you or your loved one living with MS faces as a result of these priorities not being met?
Danika: Due to lack of income security to meet my monthly financial needs, I am forced to borrow money from my family every month to make ends meet, and their finances are getting drained. This is very demeaning, frustrating and causes me to feel like a burden. It also causes me to have lots of self-frustration, and I have a strong independent mentality due to how I was raised.
Sherry: Danika has been living below the poverty line since her diagnosis because she has been unable to work full-time. She has no extra money for a social life or clothing. She lives very frugally. Income security is critical to fill the gap, and a program is needed where you don’t need a PhD to fill out the application form or wait half a year to get an answer.
Why is it important that we #MakeMSMatter to our candidates across Canada this federal election?
Danika: Saskatchewan has the highest rate of MS in the country. It’s an invisible disease, so many, including government officials, would look at someone who has MS and think that nothing is wrong with them. Many people with MS Canada are living below the poverty line and that needs to change.
Sherry: Thousands of Canadians suffer silently with MS. It affects their quality of life, self-confidence and strength. Many have no voice to speak for themselves, and because this disease is invisible, it may not seem urgent. There’s no “squeaky wheel, so there’s no grease.” We live in a first world country where people should not be living in poverty. When a person is diagnosed with MS, I believe they should be immediately triaged in the health care system and assessed to determine what supports are needed, whether it be employment, income, housing, access, etc. There shouldn’t be a struggle or painstaking wait trying to convince our governments, at all levels, that real and immediate help is needed. Politicians pass legislation and regulations to serve Canadians. Let’s do a thorough review of those programs and create new ones that serve people with MS.
What does #ActsofGreatness mean to you?
Danika: Standing up for people who can’t stand up for themselves.
Sherry: Everyone is capable of acts of greatness, and the greatest act is to help improve quality of life for all.
Like Danika and Sherry, you can choose to #MakeMSMatter by sending a letter to your candidates this federal election to let them know how important it is to you and your family. You’ll be joining Canadians from coast to coast and making a collective impact on all Canadians affected by MS.