My superpower is helping others SEE the invisibleJun 14, 2022
Hello fellow humans!
My name is Candice and one of my responsibilities as an advisor for SAIR is helping everyone to SEE the invisible. I often draw on my personal life experiences to facilitate that ability. I hope by sharing a bit of my story (below) you also will find your power to SEE the invisible with us.
Let me start by saying, that I have never been a stranger to non-visible conditions. My mom has 5, and the first began when I was only 2 years old. They shaped the way that I grew up, how my mom was able to work, or not work depending on the type of job as her disease progressed. And I always knew that I had a high risk of also developing a similar condition. What I didn’t realize, is that I already had one and was not aware that it qualified.
At the age of 12 I began having migraines, my sister had started to have them about two years prior to myself so we already knew what was happening. I never thought they would become so frequent and debilitating. I would go through periods that were good and I would have maybe one migraine a week, to at the peak I was suffering through 26 or more migraines per month. I was working full time, raising our daughter, volunteering at church, and trying to keep my life together. I had been through ALL of the treatments: preventative medications that altered my brain chemistry and resulted in severe cognitive side effects, emergency medications to take when I got them and the continual conversation with the pharmacists that – yes – my doctors did prescribe all of these medications – and no – I should not just stop all meds and see if that would make me better, all the way to Botox where I was receiving over 40 injections monthly in my head, neck, shoulders, and face. I had to have infusions of medications over a 3 day period at the hospital to break a cycle.
This condition was severely impacting my quality of life in every single way. I had a manager who told me that I should take a leave of absence because my not being in the office physically would impact my year end rating and possible promotions. The issue was, nothing was going to change without new treatment options, so a leave of absence would not change my situation. I was also unaware that my condition was covered by the Americans with Disabilities Act and that my treatment by my manager was not really all that legal. I had to explain to her that what she didn’t realize was all of the days that I was in the office and suffering from a migraine. The days I stayed home were because I couldn’t drive safely either due to my vision being impacted or because the brightness outside was too much to handle. I should never have been put in that situation, justifying my health to keep up my work reputation. Thankfully, a few years ago a new treatment option became available and I went from 26 or more migraine days a month to a few a month. I had a new lease on life!
Then the day I always feared became my reality. All of a sudden at the end of 2019, my hands were not working very well, there was a lot of pain and loss of strength. Approximately 5 months prior to this happening, my sister had been diagnosed with one of the autoimmune diseases that my mom also has. I knew the symptoms, I knew what I was most likely facing – and I stuck my head in the sand because I really didn’t want the confirmation. After a particularly challenging day, I knew that I couldn’t wait any longer, and I needed to take charge of my health and make an appointment with the rheumatologist. I was diagnosed with Psoriatic Arthritis, just like my mom and sister. Psoriatic Arthritis is similar to Rheumatoid Arthritis as they are inflammatory diseases, but instead of only impacting the joints in your body it also impacts cartilage and can have skin symptoms as well. Some of the other major symptoms can be chronic pain, brain fog, and chronic fatigue.
It was March of 2020 when I was officially diagnosed and prescribed a medication that would suppress my immune system. I cannot express how challenging it was to decide, at the beginning of a global pandemic, to take a medication that would make me even more vulnerable. I ended up making that choice with the help of my doctor, and it changed everything. I did not leave the house, ever. I stayed home and my husband did all of the shopping, Amazon became even more of a friend, and it was a struggle for everyone living in our home. At the time, we had our 2 children, and then added 2 foster daughters to the household in June. This was such a struggle, they wanted to be out and doing things, and my vulnerability made that something that we couldn’t risk as a family.
I honestly struggle with my diagnosis daily. I grieve what I thought my life would look like if I didn’t need to conserve my energy, stay in bed 1 full day a weekend just to recover from the week before and be okay for the week to come, tell my daughter that it’s too this or that or Momma isn’t feeling well enough to do what she would like to do, and not think about what getting sick could do to me or that I may not recover. I have been on 4 different medications since I was diagnosed in early 2020, one of them worked amazingly, but because the insurance company decided that for my particular condition I didn’t need it as frequently as it was prescribed, I’ve now had to try 3 more. Each time, it can take up to 3 months for the medication to be effective. That’s a total of close to a year that I’ve spent hoping medications will work, hoping this will be the one that returns me to the goal of functioning – which the doctors set at 70% my pre-diagnosis function. I’m not even forty yet and success is 70% functioning. Our daughter is 11 and our son is almost 22 – what will my physical ability look like when they maybe start families of their own? Will I be around? Will I be able to hold my own grandchildren? These are questions that I think about in the dark of night.
And these conditions give me things too, they don’t only take. I am patient in ways that I wouldn’t have learned to be otherwise. I know what persevering looks like because that is what I need to do daily. I am in tune with the needs of my body in a way I never would have been otherwise. I know that when my body says it’s time to take a break, I need to listen. I have managers and a team that are supportive of what I need and understand that that looks different than it did before. I know love and support from my family and friends that has been tested by my inability to show up – and they still care, they don’t say that I’m too much, or my disease is too much for them to manage. There is a staying power in those friends who genuinely want and care about me – even when my life isn’t easy and simple. I am able to be there for others as they are diagnosed and help them to navigate the challenges that come with chronic pain and give a perspective that everything isn’t over – it’s just different now.
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