About Michele Mateus

Diagnosed in 2008, initially presenting itself with optic neuritis MS presented three years later with a huge relapse that left her in a wheel chair for 5 months. It was during this period that she was blogging with the WAMS Foundation (who helped her with fundraising to get CCSVI). Michele became a mom April 2014 and is excited to join us here at to share her stories and motherhood experiences here at MomsWithMS.org. Michele loves to cook, big fan of salted chocolate and she runs her own photography business, you can see her work at MicheleMateus.com

Accommodation you ask? Why that’s only for special cases.

I have been wanting to write this post for some time, but in all honesty this was such an anxiety causing problem for me all summer that I only feel ok now to share my story. The short and long: I needed to seek accommodation at my last place of employment due to my MS and never in a thousand years could I have imagined how it went. I am proud that I managed to walk away from this mess with my head held high, despite wanting to further fight this, but what is the fight really worth? It came to a point that I realized that I would not want to work for an employer that discriminates against their staff. When I first got diagnosed with MS I heard horror stories of people being discriminated by their employers and I thought who on earth would be that awful?! It was a real shocker to find myself now at the center of one of those stories.

In March I had a routine MRI and two weeks before I was to return to work I went to see my neurologist to get the results and have a check up post baby. Since having my son I had really hard days riddled with pain and weakness, some days I felt like I couldn’t even hold him as I was not strong enough. I write this with tears on my face, as no mother wants to feel like she is too weak to hold her child.

When I went to see my Neurologist I told her of the pain, and I broke down as I was worried to hear that this could indeed be my MS being active. I expressed to her how terrible I had been feeling and told her I was not sure if what I was feeling was post partum changes in my body or MS, or a combo of both. After examining me she confirmed that it was indeed my MS that was to blame. She then showed me the results of my MRI, which was not that great. I had new lesions and she was worried about the progression of the disease in my body based on the symptoms I had described. She suggested that I ask my work for a few more weeks off to figure out what would be best next steps for me and she suggested that if I decided to return to work that I ask them for an accommodated work schedule.

I loved my job and I had always intended to return to work. I drove home with tears streaming down my face the entire way, scared of what could be brewing in my body, worried about my job security and sad that as a new mother I had this MS jerk in the way of me enjoying my son the way I wanted to. That same evening I tried to pull it together to call my supervisors to discuss my options. I had always had a good relationship with my place of work and was a good employee so I didn’t think there would be a problem. He was not there so I left a message letting him know that I needed to talk to him ASAP about my health and how it might affect my return to work, I followed up with an email. Almost nine days later I still hadn’t heard back, sorry but that’s just rude. I get that people are busy but when an employee leaves a message saying it’s health related, there should be some urgency to your repsonse. I called and left another email, and the reply I finally got was that he was too busy and the acting supervisor would call me.

When I finally spoke to the acting supervisor and explained the situation, I let her know that I wanted to return to work but I would like to see if I could seek accommodation to work from home two days a week (I worked four days a week) her answer was and I quote “I am not sure as we usually only reserve the right to work from home for special cases.” UMMMMM SPECIAL CASES? How special is special because I am pretty sure that a letter from a neurologist is pretty special!

I was so upset and we ended the call with nothing solved. My neurologist had connected me with a Social Worker at the MS clinic to help advocate on my behalf, and when she called to speak to my acting supervisor she too was told the same thing, that working from home was for ‘special cases’ and she offered this suggestion: I quit my job and come back as an auxiliary employee and work casually at the front desk. Apparently this would me flexibility to work when I felt well. UMMMM WTF! I could not believe my ears when my social worker told me this. So let me get this straight: leave my job of almost 8 years, go to a role four pay scales less than what I earned, loose my benefits and all job security and work on call?! Not to mention what about my contributions related to my current role being valued? Work on call? How on earth would I get childcare last minute? My Social Worker let me know that they were violating the Human Rights Code (Duty to Accommodate) and at that point suggested I file a formal complaint.

By this point we were already two months in and nothing was decided and I kept asking for my sick pay, which they would not answer my request for, not even to let me know if I had access to any. Finally I got my Union involved who also confirmed there was a violation based on the Human Rights Code and they wrote my employer a letter telling them I was entitled to my sick pay (I had 160 hours banked!) and reminded them that they had a duty to accommodate. I would like to thank my CUPE 15 representative, had it not been for him I am not sure I would have received my sick pay.

The battle went on and truthfully I began to put my head in the sand. I felt so hurt that I was being discriminated against as a person living with a disability and chronic illness. I decided to seek legal advice who confirmed that my employer had acted unjustly and that I could put in a complaint with the Human Rights Commission and even go after my employer for lost wages and the discrimination that they displayed. They also told me it could be a long battle and for me to think about the energy I had to take this further. My health was suffering, I was riddled with anxiety and I just wanted to end this all.

Not only was I dealing with the results of the MRI at the back of my mind, but all this too now. To add salt to the wound one of my fellow employee’s, who I called a friend, called me one day and told me that it appeared at work that I was ‘milking it.’ That‘s a pretty skinny cow because I was not getting a penny! I was shocked he would even suggest such a thing. Not to mention how would he have heard anything as I had only spoke to the acting supervisor.

My lawyer helped me write a letter detailing all that happened in which was sent to upper management. Two weeks passed and not one of the four I sent it to responded. I continued to feel disrespected by my employer, and question if I really wanted to spend time away from my child in a place like that? After much thought I finally decided to hand in my resignation, with yet another letter letting them know why I was leaving; I had been discriminated against as a person with MS in need of accommodation and did not want to work for an employer that had no time for their employee’s. I encouraged them to review their hiring practices when putting people in supervisor positions and that they be trained on employee rights and the duty to accommodate. I suggested that staff and management engage in sensitivity training and that I hoped no other employee would have to face the rudeness and discrimination I had to.

There are many more ugly details to this story that make it go from bad to worse but the important details have been stated. You must be thinking how can there be more, right? Like the Acting Manager gossiping at a dinner party about wanting to get my fired to her friend in front of someone that she had no clue knew me, using my first and last name. Smooth move there Mrs. Manager, smooth move. I have left names out on purpose when writing this post as my goal is not to point fingers at any specific person or the organization; if you really want to know who these people are I am sure a quick visit to LinkedIN will help answer those questions for you. Upper Management did eventually tell me (three weeks ago) that they were looking into this issue but by that time it was just two late (this all started in May!) If they had a solution, by that point I was no longer interested. I write this to close the chapter in the pain this caused me, to share with others that this still happens and let people know we have rights! Not only was I discriminated against as someone with a disability, but also as a woman returning off her maternity leave, and this was also stated by my Union rep and my lawyer. I made some mistakes along the way as I was not thinking clearly, mostly forgetting to follow up with emails and try and get as much as possible in writing. I hope my tips below will help others should they ever be in this awful position.

A few tips if you ever find yourself in this situation:

  • Accommodation is a legal right that all employers are obligated to fulfill. PERIOD.
  • If you are part of a Union go to them right away! They are helpful.
  • Write everything down and keep a folder of all emails (luckily I did this).
  • Send follow up emails after phone calls.
  • Know that you have rights and the employer is legally bound to accommodate you based on the Employment Law Act and the Human Rights Code.
  • Get a lawyer! Even if to settle your mind, get some feedback and help with the support you might need during this time. I am extremely grateful to the legal advice I was given and the support they offered me.
  • Don’t feel bad to send a letter letting people know that they are wrong. You have the right to express yourself and hold people accountable for their actions.

Lastly I want to say thank you, to anyone that might read this that I worked with (both staff and volunteers and board members) for the great times we had together. I enjoyed working with you all for the last 7.5 years and I left with a heavy heart, not having the chance to say a proper goodbye. My amazing volunteer team gave me the energy to come to work each day, leaving me with fun stories to tell and a big smile on my face daily. The generosity these volunteers showed as active members in their community always warmed my heart. I learned so much from everyone, built friendships and will forever remember the time spent with you all. I am grateful for the opportunities I was given and the chance to work with a great staff team and amazing group of volunteers and have the chance to learn so much about the arts. I wish you all the best and hope I run into you in the future.

Let the Academic Adventure Begin!

My books!

Tomorrow I start my Masters degree, which has been something on my ‘to-do’ list for quite some time. About 5 years ago I started to think about career advancement. I h always had a dream since I was young that I would continue my education and complete a Masters degree. Not many in my family have this level of education and I always thought it would be such an amazing thing to achieve. I remember the day I walked across the stage to get my diploma at the University of Victoria and the proud feeling I had, and seeing my mother’s face and how proud she also was of me. I would give anything to relive that moment. So tomorrow I start my 2 years journey towards my Masters in Communications at Royal Roads University. Most of my education will be online, and I will have to complete two, three week residencies on campus in Victoria, which is a ferry ride away from where I live now, meaning leaving my son for the first time since he was born for more than one night!

When I was first diagnosed with MS I, like many, started to have fear about doing things, something I never really had before. Having had optic neuritis I became very fearful of loosing my vision, I am a creative person and I can’t imagine not being able to use my eyes. I also then started to read about MS, go to workshops put on by the MS society and even attended a support group there a few times, and as I attended these things the fear I felt around MS would always surface. I would meet lovely people, but I would also see how the disease had progressed in many, and would see myself in them, knowing that I too could follow in similar paths. I would have fear over how this illness could take over my body and manifest in disabilities that would get in the way of living my life the way I wanted to. I worked hard to have a positive outlook on it all, acknowledging the fear all while not allowing it to control me. I would go to yoga often, take time to eat healthy and ensure that I was taking time for myself (Now as a mother I find those things have all fallen by the way side, I am sure other moms, MS or not can relate.) In 2011 I had a huge relapse and that fear came back and ran me over like a train, and over and over again. I loss the usage of my legs, was wheel chair bound and had to take time to practice what it meant to walk again. The cognitive disfunction I had was awful, I could barely finish a sentence and my brain was in such a heavy fog that I could not process much at all. The fear came back with that relapse and it made things feel so much more real as to how this awful illness can really take over your mind and body and leave you feeling helpless.

After a few years of humming and hawing about returning to school and working through my fears about completing a Masters and then and putting it off after being accepted two years ago, tomorrow is the day I finally begin! I put it off for two reasons no MS related. 1. I was trying to get pregnant for three years and it was taking a toll on me mentally and I needed to give myself space. 2. I finally gave birth to my son, which was was joyous as well as and it was hard on my body and so I needed time to heal before I could embark on this education adventure. I wanted to make sure once I started I would do it well!

The fear I had experienced is still there, it comes and goes and sometimes it stays a bit longer than I would like. Before becoming a mother I had fears about doing my masters successfully as a person living with MS. I worried about being able to handle the stress of it while working and I worried about being able to handle the cognitive side of performing at a higher academic level and I worried how I would balance it all. It has been years since I have been in an academic setting and at that time functioned cognitively much sharper than I do now. Now as a mother I have those same fears, but with the addition of motherhood on top of them all. I have found the introduction to motherhood hard, both mentally and physically. I am grateful for the supports in my life that have made it easier (thanks Tia Sonia!) but as I am sure many moms with MS know, there are days I would rather curl up in bed as the pain is in tolerable, or I just feel so weak, but I must get up and put on a semi-happy face to be there for my little man.

I often wonder how will I be: a mother, a student, a wife, a friend and a business owner all at the same time? To be honest, I have no idea! What I do know is I can’t be fearful of what could be around the corner with my health and just try and pace myself. To be a good mothers I need to also follow my dreams and remain true to what my needs are as well. Living with MS is unpredictable and there is a chance I could get ‘sick’ during my studies, but that chance is always there, studying or not.

I have my school supplies, my books and today am doing my orientation to online learning. Everything feels ready to go, but I still have that little ball of fear at the pit of my stomach. I am also filled with excitement and pride that I finally about to start my Masters!
I know there will be times I will fall and need to get back up.I know that I won’t get to be as social as I like, may not see friends as often as I like (motherhood has already changed that a bit) not remember birthdays and not be able to attend as many fun events as I would like. I know it isn’t going to be easy, but I know I can’t wait to walk across that stage and get my diploma and have my son waiting there to give me a big hug! That is what is driving me and gets me excited about starting this academic adventure! But let’s be honest here: I am nervous as all hell about it 🙂

I would love to hear from others that have taken on such full plates as a mom living with MS and some of the ways you helped yourself and your family through busy times like this.

Introducing Michele Mateus our new blogger here at MOMS with MS

Hi I’m Michele Mateus and I am excited to be a new blogger here on Moms with MS.

I was diagnosed with Relapsing Remitting MS in 2008 in which presented itself with optic neuritis. In 2011 I was hit with a huge relapse that left me in a wheel chair for 5 months then a walker after that for another 3 or so, and a long road of rehab to get strong again. During this period I was blogging for the WAMS Foundation (who helped me in fundraising to get my CCSVI) and I loved blogging and sharing my experiences and outlooks on how we can live with the MonSter. When I stopped blogging for them I missed it but was not sure where else to blog and starting my own seemed all to overwhelming. Fast forward a few years and here I am sat now as a new mother, and like many new moms do I was struggling with the new role, but also my MS was there in the background popping up on days when I really could have done without. So I searched for resources on being a mom living with MS and I came across Moms with MS. I was excited to see that there was a blog and an online community of other moms that would really understand what it is like being a mother who lives with a chronic illness. Meeting new mom friends is hard enough to say the least, so finding this space was very exciting to me!

I reached out to Kristin that started this site and after we started chatting a bit I remembered that she read my old blog and would often retweet and share my posts; pretty cool how things often go full circle in life. She asked me if I would consider writing for Moms with MS. When you blog for something you believe in, something that is part of you it makes you vulnerable but it also empowers you. Some of the things that came to mind when she asked me were:

  • do I want to go ‘there’ again? ‘There’ meaning opening up to the world and sharing my inner thoughts and my challenges (and of course success too!) in a world that is so much more online than it even was 4 years ago.
  • I worried that putting myself out there again could effect my professional life and my photography business. Would people judge me and see me as someone not as strong that they could rely on because of my health condition?
  • Would I loose potential clients if they knew I had MS? Would my peers think I can’t do my job well because I am ‘sick’ (ps: I don’t think of myself as being sick, ever)
  • Do I even have time for this?

After I went back and forth on the worries I had that were blocking me to do this, I then thought of the positives.

  • When I blogged before my blog was very active, I would often have upwards of 10 comments on each post that became like mini discussions, which was great to be part of.
  • Blogging allows one to connect with others that are experiencing the same thing and makes you feel you are not alone.
  • Blogging makes you feel part of something bigger and positive.
  • Blogging can be therapeutic and help one work through some of the struggles faced when living with a chronic illness.
  • As someone that loves to research blogging is a great incentive to do so, reading about new therapies and ways of self care, which are things I used to read about and do so much more before becoming a mom, so in this case blogging is also a motivator.

After weighing out my fears vs. the positives that could come about joining Kristin I finally told her it was a YES and I was ready to go! So here I am introducing myself to this community and excited to be part of it. It is my goal with my blog posts to share some of my experiences as a mom living with MS and hopefully start some discussions around what that looks like and how we as a community can support each other. By we I don’t just mean moms with MS, I also mean those that love and support us as well as the general public. Knowledge is empowerment and if more people learned a bit more about the other we would cultivate more compassion and understanding in the world, and hopefully have less judgment and conflict.

I would like to say a BIG THANK YOU to Kristin for inviting me to join her here! I look forward to connecting with this community.

Michele Mateus & Her Family

Michele Mateus & Her Family. Photo credit @Alyssa Kellert Photography