Meet the Patient - Tara

On June 15, 2017, my life changed drastically in a way that I would never have imagined it would. Born and raised in Hamilton Ontario, I was always very active and curious with a love for the outdoors and learning. My parents always say that when I was a child, it was very hard to keep me inside for on sunny days, right after breakfast, I would go outside to play with friends, and stay out until dinner to just go back outside after until the street lights came on. On rainy days, my mother would put the car on the driveway, so that my brother and I could still play outside but not quite outside. I spent my childhood playing soccer, volleyball and basketball, being a naval cadet and girl guide, doing jazz and contemporary dance, hiking, and cross-country skiing.  

If I was not outside, you would be guaranteed to find me with my nose in a book for I have always had a great love for reading and learning especially anything science, engineering and historical. It was this love of the outdoors, reading and learning that lead to my desire for a career as a geologist and environmental technician. In 2004, with a full scholarship, I attend the Earth Science/Geology program at Laurentian University in Sudbury Ontario. While doing my undergraduate degree, I was very blessed to be able to work in my field during my summer months off for exploration companies, which took be to the Canadian arctic. Those experiences lead me to become hired, when I graduated in 2008, as a field and project geologist for an iron ore exploration and mining company located Newfoundland and Labrador. 

My entire life, I was always a very driven, hard working and ambitious individual, so it was no wonder that I had big dreams and ambitions for my career as a geologist. By the time I was laid off in March 2014 due to a big decline in iron ore prices, I had worked extremely hard to advance in the company to become one of two of their senior field project geologists and exploration managers along with becoming their only geochemist, mineralogist and sampling and QA/QC specialist. After being laid off, I chose to go back to school at Mohawk College, under another scholarship and sponsorship, to become an environmental technician and have another tool in my tool belt. However, I was never able to put that diploma to use or continue my career as a geologist, because my life took a sudden, unexpected and drastic turn a day after graduating from Mohawk College, and two and a half months working for them in a new job.

Starting in December 2015, I had noticed gradual changes to my body, such as fatigue, acid reflux, swelling of my joints, feet and hands, soreness and pain throughout my body, fingers beginning to curve, Raynaud’s, and tightening and hardening of my skin in certain places. My doctor and I never thought anything of these systems, because there was no detection in my blood for scleroderma initially. My doctor just said my symptoms were due to arthritis from family history, eating foods I should not, being out of shape, stress and over doing it. We never saw what the future held for me.  

On June 15, 2017, at the age of 31, I suffered a scleroderma renal crisis, and nearly died in hospital due to it. It started with a migraine, which I would have when I was a teenager, but they went away when I was 14, so this was unusual for me. I had just started a new job at Mohawk College, so I had to go home due to this migraine and choose to go to my parents’ home close by to Mohawk College. Over the next 16 hours things got much worse. The migraine was getting worse and worse, and causing pain all over my skull into the back of my head. Besides the migraine, I was being sick every half an hour and it was olive green which told me I was not well at all. The next morning, when I tried to go to the bathroom, I was very disoriented and could not focus my eyes to walk straight. My mother had to help me back to the guest room and sitting down on the bed. I had trouble focusing to send a text to my boss to say I would not be into work that day. My mother wanted me to go to the hospital, but I told her it was only stress related, and if I still had the migraine in the afternoon I would go to the hospital.

I never knew that when I lied back down and closed my eyes, I would wake up 8 days later in the ICU at St. Joseph’s hospital, fighting for my life. My mother told me that shortly after I went back to bed, I had a seizure, which she heard from down the hall in her office. My mother is a nurse, so knew something was not right when a horrible sound came from the guest room. When she hurried to the room, I was having a seizure and did not wake up from it after. She noticed I was fuming at the mouth and not breathing right, so called my dad to call 911. In the ambulance, I had another seizure along with another one in the ER, and began to have delirium. They discovered that my blood pressure was 252/192, heart rate 195 beats per minute and my brain had swelled causing the seizures and delirium.

The doctors in the ER discovered that my lungs, heart and kidneys were failing on me, and I was suffering from Scleroderma Renal Crisis. As they tried to start an IV, my veins were blowing due to the high blood pressure and heart rate but finally after a number of tries, they got an IV started. However, they told my mother that in order to save my life, they would have to put me into a medically induced coma to calm me down and stop the delirium for my blood pressure and pulse was still rising from it and all my organs failing. I cannot imagine what my parents were going through at that time, but they told the ER staff to do what had to be done to save my life. The next 8 days, were unbearable for my parents, not knowing if I would make it, for they were told that less than 2% survive Scleroderma Renal Crisis. Finally, after blood tests and an MRI, they were told that my brain swelling went down, and blood pressure, heart rate and organs were under control due to the medications they put me on.

 When, I woke up in the ICU, it was in the early morning hours, and it terrified me. I thought I was in a dream, thought I had to wake up and get home. However, I was awake and was not going home. I could not speak due to a breathing tube and feeding tube in my mouth and down my throat. I had an IV in my wrist, an oxygen meter in my other wrist, oximeter on my finger, blood pressure cuff on my arm, heart monitors on my chest, and another IV in one of my ankles. I had no idea what was going on, and hit the side of the stretcher. When a nurse came to see me, he told me what had happened, which was that I had been diagnosed with systemic sclerosis scleroderma with skin and organ involvement. I suffered a very rare and deadly scleroderma renal crisis, my organs were failing and as a result my blood pressure and heart rate rose to dangerous levels causing my brain to swell (PRES: Posterior Reversible Encephalopathy Syndrome) resulting in the migraines, confusion and disorientation. He said that I nearly died, arrived at the hospital lying on death’s door, but everything was under control again due to a concoction of medications. He told me that I was not leaving the hospital anytime soon, and for every day in the ICU was a week of recovery in the hospital. I could not believe what was going on. A week prior, my family doctor told me I was healthy as a horse. How could this have happened to me?

I was told that my scleroderma was caused by my job as a geologist and breathing in the iron ore dust. It is the silica in the iron ore dust that is linked to scleroderma. They determined this by the fact that the antinuclear antibody (ANA protein) in my blood, that is tested to screen for scleroderma and other connective tissue disease, tested weakly positive which showed that I was not born with scleroderma but it came from an external source. My parents told the ICU doctors and my rheumatologist about my work, and my rheumatologist knew that the iron ore industry like the coal and oil industries causes scleroderma due to the silica the material contains. My parents and I were given many publications, with some dating back to 1968, stating and proving this fact. Some of the publications did studies on iron ore workers in a mine south of where I worked and in the exact same material as I was working with. I could not believe this, the job I loved so much and dedicated my life too, is what has made me so sick and nearly killed me. It was a big blow and shock to me. Not only did I have to wrap my head around that information, but I had to wrap my head around my diagnosis of systemic sclerosis scleroderma, which I had never ever heard of before.

I spent another 6 days in ICU (2 weeks in total), which meant I would spend another 14 weeks in hospital. However, I wanted to go home as soon as possible, worked as hard as I could, and got out of hospital 3 weeks later after spending a week in the medicine unit getting the right combo of medications, and 2 weeks in rehab getting back on my feet and able to move around and take care of myself. I spent the rest of the 14 weeks recovering at home with my parents who I moved back in with for I would not be able to live on my own for the unseeable future due to what had happened to me and my diagnosis.

When you are in a medically induced coma and wake up, you have to learn how to move all over again, and how to feed, care and dress yourself all over again. It is the most humiliating experience of my life to have to do all that again, and have others help you with it. It is an experience I hope to never ever go through again. When you are in hospital that long, it gives you a lot of time to think and reflect. I remember constantly asking every doctor who came in to see and exam me, “Was there any way that I could have predicted or stopped this from happening?” Every single one of the doctors said to me, “No! Scleroderma Renal Crisis suddenly happens without warning.” I also asked if I would be able to work again, and was told with how much damaged that scleroderma had done to my body that they highly doubted it.  

Despite being told that, I tried to go back to work after the crisis, but found out that I could not due to fatigue, pain, and limitations with my hands. I tried to figure out other ways to work such as being a consultant. However, as a professional geologist and sign off on work and reports, you have to spend a certain amount of time in the field observing the work. I would not be able to do that, for all of mining sites are located in isolated areas or places located more than half an hour away from a hospital. I was told that if you have renal crisis once, you have a ¾ chance of it happening again, and if I notice my blood pressure go up above 140/90 for more than a few days, I have to get to the hospital for treatment, but if I get a migraine with the high blood pressure and pulse, I have half an hour to get to the hospital and treatment. This is not possible in the career that I work in. Also, my career is very physically demanding, with lifting more than 50 pounds, being on your feet long periods of time, and hiking over 7 km a day. It was not possible to continue to work in my field with scleroderma, so I was forced to retire early and my specialists agreed with me.

It was a major blow to me to have to give up my career and to retire early. I loved working and working as a geologist especially. I was dealing with trying to come to terms with my scleroderma diagnosis and what it has done to my body, but now had to come to terms with not being able to work anymore. I had to figure out what my future held, had to deal with applying for WSIB and CPP disability, and going to constant appointments, tests and exams. I felt that I was living at the hospital, and constantly doing paperwork and getting specialists’ letters and reports for WSIB and CPP disability. It was an extremely stressful time of my life, but also a very hard, sad and low point in my life.

I was not only trying to come to terms with the diagnosis and what my life was going to be like, but also having to fight tooth and nail for WSIB. The company lied to WSIB saying I never worked up at site and was never exposed to silica. However, my colleagues signed affidavits stating that I was working up at site and was exposed to silica dust and large amounts. These colleagues added to my case stating the lack of proper PPE, no quarterly dust level monitoring, no safety data sheets or material handling sheets, and was exposed to the silica dust 24/7 for it was on our clothes which was brought to our homes we stayed at. It was due to those affidavits that I won my case, but then began the exams by the WSIB doctors to double check the statements and reports from my specialists, determine if I truly could not work again, how much of my body was permanently impaired and damaged by scleroderma, and determine what type of coverage I would receive. Finally, after fighting for nearly 3 years tirelessly, some very good news came my way, my WSIB claim was accepted in 2020, and in 2021 my CPP Disability claim was accepted. I knew that I would be looked after and covered for the rest of my life, not just financially, but medically with medications, at home care, supplies, and treatments. However, it does not come without loops to jump through, because for everything new I need, I must fight for it to be covered by going through tests, exams and doctors’ reports and proof from publications and research. It will continue to be an endless battle of getting things covered, which it should not have to be in addition to the battles I face with the actual scleroderma disease.

Over the past 8 yrs since diagnosis, it has been a rollercoaster ride of emotions mixed of both good and bad ones and consisting of continuous medical appointments, tests, exams and treatments such as chemotherapy of cyclophosphamide and IV/IG. I just roll with the punches, and am very thankful for what I have in my life and what I am able to do. I may not be able to work any longer, but I have certainly gotten involved in volunteer and advocacy through Scleroderma Canada, Scleroderma Ontario and WSIB. After diagnosis, I may have needed to live with my parents for 4 years, but got well enough to move out into my own 2-bedroom apartment in Hamilton again. My parents are never too far away, and are a 15 min drive from me. My parents always tell me that if I feel unwell, scared or just want to come home to give them a call and they will come and get me. My parents and a few cousins and dear friends are my true support system and have been my tower of strength through all of this. I certainly have lost friends and family members through these past 8 yrs, which hurts a lot, because they just do not know how to handle me being ill and not like I used to be. However, I have strengthened and made other relationships with family and friends stronger along with gaining wonderful friendships along the way. I may not be able to do certain activities such as hiking, cooking dancing and helping my parents out around the house and garden like I used too, but I have found ways to still be able to do them just in a different capacity to what my body handles.

The emotional and mental aspects of being diagnosed with scleroderma is quite great too. I never used to take any medications except for a daily vitamin, but now I take 10 different mediations a day for a total of 22 pills a day and a meal replacement for I do not eat enough in a day. It is hard to wrap my head around the number of pills I need to take. It is hard to come to accept the diagnosis of scleroderma, and I still have not come to accept it, thinking this is all a nightmare that I will wake up from. However, that is not the chance. It is a very lonely, hard, scary and depressing feeling to be living with this disease day in and day out. Not only does your body not work the way it used too, you are losing control of certain bodily functions, and both the inside and outside is being damaged constantly with new symptoms showing up and other areas being damaged and affected. The uncertainty of the future is hard to coop with for we do not know and cannot predict what this disease will do to me in a year, 5 yrs, 10 yrs or even 20 yrs from now. I try not to think about it but appreciate being alive, walking and talking, having what I have, and enjoying the time I have with family and friends.

Daily tasks become harder to do as this disease progresses.  It takes me at least 15 to 20 minutes to get dressed in the morning from exhausting, pain and stiffness. You put one sock on, take a break, other sock on take a break, and it is the same for your pants. Sometimes the fatigue is enough to make me not want to get out of bed in the morning and spend most of the day in bed, but I nap throughout the day from it. Those who know me have received emails at all times of the day and night from me even at 3am, because I do not sleep straight throughout the night. I wake up every two hrs from pain and acid reflex, to have to get up and move around for an hr or two and go back to bed. My dog certainly loves this new routine. I suffer from PTSD from the renal crisis, anxiety, OCD and panic attacks, which I never used to suffer from before the renal crisis. Your brain cannot stop from going to dark places such as why me, I am a burden to my family, and what if I did not make it from the renal crisis, my family would have been better off and not dealing with a sick family member and this disease. However, to be surrounded by wonderful family and friends who love me very dearly, they are always open to talk with me and make me feel the opposite of those dark thoughts. They are also dealing with emotions of their own, hating to watch a dear family member live with scleroderma, and worried about the future of how long will I be with them, will I be able to live a long life and what else will this disease do to my body. We all have had some good cries and talks about it, but also some good laughs such as I will never need Botox injections to look younger for I produce too much collagen and my skin is already tight so nothing will wrinkle and sag. However, even if they are there for me and support me, they have no idea how it truly feels to live with scleroderma. This is where the support group comes into play, and why it is important to talk and be around others living with scleroderma for they understand it and how I feel and think.

I know the future will not be an easy one without its bumps and blips, but I know it will have some wonderful highs like the past 8 yrs. I was always raised to appreciate the little things in life such as watching birds and animals, enjoying a cloudless night sky, flowers in spring and summer and a warm sunny day. I believe in this lesson day to day, and I will continue to live this lesson day to day. I was taught to deal with things day to day, which I will continue to do with the support of my wonderful family and friends but also the scleroderma community who I hold dear to me like family and I would not have if it was not for the support group. I have been asked by others, “Why do you laugh so much with what you are going through?” I always say back to them, “Why not? There is so much to be thankful for and enjoy in life. Crying and feeling sorry for myself will not change anything. It will not get rid of scleroderma. I just have to live with it and learn to love life with it.” There is a saying my mother said to me, “Scleroderma may have won the battle to get into your body, but it will not win the war just yet to bring you down.” I love this saying, and will continue to fight scleroderma tooth and nail with the help of family, friends and the medical specialists I have looking after me.

Q&A with Tara

What’s one thing people might be surprised to learn about you?

Most individuals think that due to my science and engineering background, that I am not a creative person at all. However, that is furthest from the truth, because I love to knit, sew, crochet, cross stitch, embroidery, and all sorts of different types of needlework. I was very lucky to be taught by both of my grandmothers, who believed everyone should be able to do some sort of needlework. I was a more than willing student and gave me great memories with both these incredible women. Despite my hands, I have found many ways to keep being able to do all these types of needlework. 

What’s your favorite way to relax and unwind when you're not leading support groups or doing your scleroderma work?

Besides reading and needlework, the other way I love to relax and unwind is spending quality time with family, friends and my 4-year-old German Shepherd/Labrador mix fur baby named Samantha. Those that I love and are close to me are very easy going, and have always had a very calming affect on me.

What led you to pursue SPIN training and become a certified support group facilitator? Can you walk us through your decision to take that step?

This will help our readers understand why you chose SPIN and how it has shaped your work.

When I first got diagnosed in 2017, it was news that was very frightening and overwhelming to be told. It became even more terrifying when you would research Scleroderma online and read everything especially seeing the life expectancy of 3 to 5 years for those diagnosed. When I told my rheumatologist of what I was reading and all my fears, she told me that is not true, and told me about the Hamilton support group. My rheumatologist thought it would be best for me to be around and talk to other Scleroderma patients.

I remember going to my very first meeting about 5 months after being diagnosed, and how wonderful attending the support meeting was for me. I met other scleroderma patients who have been living with the disease for more than 5 years with some having it for over 20 yrs. These members gave me so much inspiration and hope for the future. They even became close friends to me that I would call to talk to about scleroderma but other things too. I would even get together with them outside of the meetings for tea, lunch, shopping, theatre and other fun outings. There was even one member who got me involved in the Ancaster Historical Society that she was a member of. The support group gave me a community of like minded individuals who were going through the same disease that I was, and understood what I was going through, thinking and feeling. We all supported each other and were there for one another. It was an amazing group of people to be around. I made a lot of new friends who are still great and close friends of mine to this day.

However, there was no facilitator of the support group who would organize and run the meetings. There was no structure to the meetings with months even being missed.  No one knew quite how to begin them or what to talk about with many of the meetings with discussions not scleroderma related. This all lead to the meetings beginning to slow down, and members began to slowly disappear.

When the pandemic hit in March 2020, meetings completely stopped and never beginning again after the pandemic. It was at the 2023 Patient Information Night, that I ran into a previous member of the support group, who asked me about whatever happened to the support group and will it start up again. I was not sure, so contacted John Maccolmson about how the Hamilton Scleroderma Support Group could be restarted. He informed me that the support group would need a facilitator to organize and run them. I knew no one had stepped up to take on that role, so I decided to take it on for I knew how important it was to have a support group for scleroderma patients especially those who have been recently diagnosed. I remembered how important it was to attend these meetings for myself when I was first diagnosed. The help, support, community and friendships that I received when I started to attend the meetings, I wanted to provide that again for the Hamilton scleroderma community.  

I had no idea how to become a support group facilitator, until John told me that the Scleroderma Patient-centered Intervention Network (SPIN) did a facilitator training course called “The Scleroderma Support Group Leader Education (SSLED) Program”. When I looked into this training program, I decided to pursue it, because SPIN is geared towards developing and providing support programs to patients with rare diseases such as scleroderma. SPIN also is partnered with Scleroderma Canada and Canadian provincial patient organizations such as Scleroderma Society of Ontario, the Scleroderma Foundation, and works with scleroderma researchers, health experts, clinicians and patients to develop their programs to best support scleroderma patients. I loved the idea of doing a training program provided by an organization, which is already supporting scleroderma patients who I want to be a support group facilitator for. Upon this, I believed that they would deliver tips, tools and information on being a facilitator for scleroderma patients specifically, and not just taking a training program on being a facilitator in general without a specific target audience in mind. The other aspect of SPIN training program that I was drawn towards is, that after the initial training program is completed, there is an opportunity to take part in SPIN’s graduate classes for support group facilitators. This graduate program allows facilitators to come together once a month for more in-depth training on a number of different topics on being a facilitator and running a successful support group. These monthly meetings allow facilitators from around the world to get together over Zoom to share experiences, and help each other with issues and concerns within our own groups. SPIN’s training is not just completed after the initial training is completed; it provides the facilitators with continuous resources to help us along our support group facilitator journeys. All of the above is why I choose SPIN training. I want to be the best scleroderma support group facilitator that I can be for scleroderma patients, and believed SPIN’s training program would help me do that.

For those who might not be familiar, what exactly is SPIN training? What does it teach, and how does it prepare individuals to run effective support groups for scleroderma patients and their families?

The SPIN (Scleroderma Patient-centered Intervention Network) training course is called the Scleroderma Support Group Leader Education (SSLED) Program, and is resource to provide you with information, tips and tools that will helps you become an effective leader of a scleroderma support group. The training program is 12 weeks long with a Zoom session once a week that is 90 min to 120 min long. There is a different topic for each week’s session such as the role of a support group leader, how to start and structure a support group meeting, successful support group culture, managing group dynamics, advertising and recruiting, grief and loss, remote and in person meetings, supporting yourself as a leader, and scleroderma 101. The role of a support group leader session was all about what you are responsible for as a support group leader, such as being willing to opening share my own experiences, to meet once a month, actively listen to support group members needs and wants, and to try to keep a positive atmosphere in the meetings. It went over what was not expected of you such as not taking the place of a health care professional and giving medical advice or assessment, not responsible to be a scleroderma expert, not solely responsible for the success of the group, and not responsible for the expenses of the group and not paying out of your own pocket for this related to the support group. The lessons also provided me with knowledge of the best locations to have the support group, how to advertise for them, how to search for and reach out to guest speakers and what topics would be great, and recruiting members such as by social media, postings in doctors’ offices, and email blasts. There was even a session of Scleroderma 101, which taught us all about scleroderma by providing information on the different types of scleroderma, symptoms, causes, treatments and alternative approaches. It also taught me how to determine if the medical information that is found online is reliable.

The two best lessons that I loved the most was on grief and loss and managing group dynamics. There were two lessons on grief and loss. The first week was on the definitions of loss, bereavement, grief, and mourning, different styles of processing loss and grief, strategies for healing from loss and grief, and how to deal with grief and loss as a support group leader. The second lesson dealt with grief in newly diagnosed members who can be fragile and resilient, common cognitive and emotions reactions such as anger, guilt, fear/anxiety, denial, dependence and depression, and how to reach acceptance and adaptation with respect to the diagnosis of scleroderma.

The lesson on managing group dynamics taught me how to identify and manage potential conflicts within my group, such as minor issues like going off topic and talking about scleroderma group members not present, and major issues like conflicts between members, members giving medical advice, and handling members who have anger and depression. The lesson went over how to identify and respond to different types of member personalities like those who are overly talkative, shy and chronically negative, and manage situations involving these types of personalities. There were small videos that showed each type of conflict and personality type, and the right and wrong ways to solve and handle them, which were extremely helpful. I thoroughly enjoyed the SPIN training, which was very in depth and detailed. There was enough time to ask questions to the constructor to help further my understanding and knowledge of becoming a support group leader.

How has being a facilitator impacted you? Can you share a moment or story that stands out from your time leading support groups?

The impacts of being a facilitator are quite incredible. Since being forced by my scleroderma into early retirement, being a facilitator has given me a purpose again.  I have always loved helping others and my community, so being a facilitator has also given me a wonderful way to give back to-and help others and my community. II know first hand as a scleroderma patient how frightening and overwhelming a diagnosis of scleroderma can be, what it does to you emotionally and mentally, and how difficult it can be to find support, resources and a sense of community with similar individuals going through what you are. I do not want other scleroderma patients to go through what I went through at the beginning of my scleroderma diagnosis and journey. Being a facilitator allows me to be able to put those supports, resources and information into place through the support group meetings.

Support group members get personal rewards from being involved but so does the facilitators. Family and friends have no idea what scleroderma patients go through day in and day out. They also do not want to hear us vent about our disease, aches and pains, medical procedures and tests. Some close up and do not want to talk about the disease at all. I know for myself to connect with other scleroderma patients is extremely wonderful, because I know that I am not alone in what I am going through and feeling. The support meetings are a safe, open, comfortable, welcoming and free space to express our fears and worries, and to talk and vent about the disease and experiences when you cannot at home or with others in our lives. As the facilitator, I want to be able provide to my members this type of environment where they feel safe, comfortable and welcoming. At the meetings, we can share experiences which hopefully will help other scleroderma patients, and make a meaningful and positive contribution to their lives.  

I know first hand as an individual living with scleroderma, that when you doctor google scleroderma, the information on the internet can be extremely scary, depressing and overwhelming, especially seeing the life expectancy of 3 to 5 years after diagnosis, it is wonderful to meet and talk with others who have been living with scleroderma for over 20 yrs with some close to 40 yrs. You begin to learn that those figures and information are not always true or are outdated and need to be updated. There are many factors that lead to those figures from individuals age, how long they showed symptoms before diagnosis, scleroderma type and involvement, are the patients going to their regular appointments, taking care of themselves, taking their prescribed medications, etc.

Another reward of being a facilitator is being able to arrange for educational speakers to present at the monthly meetings with the help of the support groups parent scleroderma organization. These educational speakers can consist of individuals such as physicians, health educators with scleroderma experience, dietitians, dentists, social workers, yoga instructors, financial experts, occupational therapists, researchers, etc. The members and myself as a facilitator are able to get up to date information on scleroderma, and allow us to further and broaden our knowledge of this rare disease. Being a facilitator, I can also provide resources and information to help those living with scleroderma get by day to day. 

Another reward of being a facilitator is being able to make meaningful social connections and possible lifelong friendships with other individuals living with scleroderma. I know firsthand how wonderful making those social connections is to my mental health and overall well being. After my first support group meeting, I remember walking out after with phone numbers and emails of other scleroderma patients. Some of those individuals I telephoned once a week to talk, not just about scleroderma but all sorts of topics, and those phone calls could last for 2 hrs. We would even arrange get togethers for coffee and tea, meet for lunch and dinner, and go to the theatre and movies together. We would even join the same clubs together such as book clubs, knitting clubs, and historical clubs. We found that we did not just have the same disease but also shared many other similar interests with each other. We would even get together at each others’ homes for holiday celebrations, BBQs and birthday parties. I have made some wonderful life long friendships from being a part of the scleroderma support group meetings which I will forever hold very dear to me.

The greatest feeling and makes me know that the meetings are truly helping those with scleroderma is when I receive positive emails from members. They let me know how much they enjoy the meetings, and learn a lot from not only the guest speakers but also from other members. Their emails also let me know that the meetings have truly helped them, given them a sense of community, and has given them a positive outlook on life living with scleroderma. They learn that not everything is gloom and doom after being diagnosed with scleroderma, and you can live a fulfilling and long life with the disease.  

The greatest reward for me being a facilitator was just after our second meeting, members of the support group shared with me that they wanted to get together for social time outside of the monthly meetings. It was amazing to see and hear that some of the members felt comfortable enough to want to socially get together with each other. They asked if I could arrange a social get together with some of the other members who were interested. I compiled a list of members and their emails, and arrange a coffee and tea get together. It was at this get together that I show how happy it made the members to get together with others living with scleroderma to share experiences and just to get out and be together as friends. Those who were there thoroughly enjoyed it, therefore we have been continuing to do these social get togethers every month outside of the regular monthly support meetings. It has given all of us another family outside of our blood family to be with, which is the best thing in the world. Being a support group facilitator has been one of the greatest experiences and roles I have taken on in my life. Yes it is a lot of work, but the rewards and benefits make all the hard work 100% worth it in the end.  If my experiences with scleroderma can help just one other scleroderma patient, then I feel like I have done my job as a facilitator. I do not want other scleroderma patients to go through what I went through when I was first diagnosis and navigating the medical system and resources. By being a facilitator of the Hamilton Scleroderma Support and getting it back running again will allow me to help accomplish that goal and help others.

What has been the biggest lesson you’ve learned from your experience with support groups and SPIN training?

The biggest lesson that I have learned from my experience with the support groups and SPIN training is that everyone grieves in their own way. Grief does not have to just be the loss of a loved one but can be the loss of who you once were, the way your life once was, and what you were once able to do. Some people deal with grief by denying and ignoring it while others are showing a lot of emotion or none. The length of time someone grieves differs too, and there is no right or wrong way to grieve. We are all so different, so will grieve differently. It is the same thing for anyone coming to accept their diagnosis of scleroderma and coming to terms with it. Some accept their diagnosis very quickly and adapt to it, but others can take months or even years. It can sometimes be hard to figure out how best to support someone who is grieving, if either by humour or sympathy and empathy, because some people like humour to get through things, while others are just not ready for that yet and want someone to be sympatric and empathic to their feelings. I am doing my best to support those who come to the support meetings by reading individuals’ facial expressions and tones of voices. I may not always get it right, but I am doing my best and learning as I am going.

Another lesson I have learned is that everyone needs different types of support from collecting as much information as possible about scleroderma, or just wanting to listen to other scleroderma patients’ experiences. Also, others living with scleroderma sometimes just want to talk and share their experiences or vent and get things off their chests which they cannot do at home. There will be those who will cry at the meetings and be emotional, which they should feel safe and comfortable doing for that is why the group is there, but there are also those who just want to laugh and joke with others. I have to find ways to allow both those individuals to do those things. I have learned that everyone is different in the topics they want to hear about at the meetings, and want to be fair to everyone’s interests. It is hard to make everyone happy for everyone is so different with different needs, but at least I can make majority of those coming to the meetings happy.