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Family, Friend and Caregiver Stories

Informal Caregiver’s Perspective

By Deirdre Schultz

Many people are familiar with the “Hard word.  Harder disease.” slogan.  Its’s true the disease is difficult to manage and to endure.  In 1993, I was exposed to the word for the first time, I was 17 and there was not a lot of information available at the time.   I was not the person who was diagnosed with the disease, that was my mother.   I was angry and any time someone asked me about it I would respond rather harshly with “It’s a rare disease and if it gets into her heart or lungs she will die” At the time that is what I knew and thought about Scleroderma. 

Since then, we have been fortunate enough to grow along with the efforts of many to provide more information, support, more resources, awareness and research.  I fear the things that have not developed are the resources and awareness for the support team of a Scleroderma patient.   Like with any disease, the person most affected is the patient, they are the one that suffers the pain, discomfort and fear of the progression, of the unknown.  However, the disease ripples out and affects the surrounding people who are at the ready to provide support, understanding and love. 

As care providers, we can accompany patients to appointments.  Most doctors and specialists welcome this as it allows for an extra set of ears to hear the diagnoses, the next steps, the explanations.  It allows for questions to be asked that at the time a patient may not think to ask.  It allows for the caregiver to understand and ask their own questions.  I would encourage all support people to advocate for this, many patients are stubborn and independent, I applaud strong people.  The thing to consider is that in patients being strong, they are not allowing the people around them who are watching the effects and the progression to find the answers and to prevent the fear from taking centre stage.

The Scleroderma Manitoba association hosts support group meetings; they attend seminars, conferences and provide information booths at certain events, host educational days.  These are not just for the patients; caregivers, providers, family, friends, anyone who is part of a support system should participate in some of these.  It provides insight, understanding, it provides a comforting awareness that you’re not alone, you are not the only one dealing with a hard situation.

In the 26 years that my mom has lived with scleroderma, I have seen the change, I have seen her struggle.  I used to fear it; I used to be angry about it. If I am honest with myself I still am, but I have also seen the strength and resilience not only in her but in the many I have met over the years.  I have been forceful in my participation and I have been able to gain a more accurate picture of the obstacles, I have been able to provide a support that she needed and will continue to pull from. 

Don’t sit back and wait for the answers on how to help the people you care for, find the answers and be a strong support.  It helps patients heal and it allows caregivers to thrive.