This post is Part Four of My MS Story
Have you read about how I selected my MS treatment?
It’s difficult for me to reflect on how I emotionally handled my diagnosis. I debated whether I wanted to share this part of my story publicly. I ultimately decided to share this sensitive chapter of my life because I know other people struggle to cope with their chronic illnesses. I want you to know that you’re not alone, and grief is a normal and appropriate response. Please consider finding professional support, such as a grief counselor or therapist, to help you work through this very emotional time.
Nothing prepares you for being diagnosed with Multiple Sclerosis (MS). Even if you’re tough as steel, MS will bend you. I was ready to hear my diagnosis and begin making medical decisions.
I wasn’t prepared to handle the emotional impact of living with MS.
I appeared to handle my diagnosis well. People often told me how strong I was and how well I emotionally managed my diagnosis. I woke up every morning and continued my routine, rarely missing work or allowing my responsibilities to slip. During my first year, I continued to excel at work and pass my doctoral courses.
All the while, my sense of self eroded. I couldn’t escape the truth of my new life no matter how much I tried to ignore it. My legs were on fire. Each step was like wading through water. Information took a long route to reach the processing centers of my brain. And uncertainty fueled my anxiety.
The life my husband and I worked so hard to build was slipping away. I felt betrayed by my body for not giving me the tools I needed to save it.
But I didn’t tell anyone how I felt, not even my husband, who deserved to know. Instead, distractions buried my emotions and prevented me from coping with my diagnosis. Anxiety consumed me and replaced a once confident, happy woman with a person void of self-worth and full of shame, guilt, and sadness.
I lived this way for over a year.
I tried to be “stronger” than MS.
The Internet is full of stories and inspirational quotes, which intend to give people living with MS hope. The articles also try to change the public perception of what we’re capable of achieving. I read stories about people living with MS who complete Ironmans, climb mountains, run companies, or work in high-stress jobs.
Each story gave me false hope that my life didn’t have to change at all. I could continue working 100 hours a week (not an exaggeration, I was a full-time doctoral candidate and working full time as a cybersecurity and privacy leader). I told myself that my legs would eventually go back to normal. I ultimately could go on runs and engaged in all the physical activities I enjoy.
I thought being “stronger” than MS meant not allowing any of my symptoms to impact my life. I thought it meant not changing anything about my lifestyle or not giving up the goals I had set for myself before my diagnosis.
If I take the elevator when other people are climbing Kilimanjaro, does that mean I’m not stronger than MS? If I take a nap because the fatigue is just too hard to push through, does that mean I’m not stronger than MS? If I quit my goals because chasing them impacts my well-being negatively, does that mean I’m not stronger than MS? If tears pour down my face because I’m grieving how easy my life was before, does that mean I’m not stronger than MS? No. It means I’m strong AF for accepting my illness and adapting to my needs.
For a while, the hope that my symptoms would improve motivated me to push through my day. It’ll get better, I told myself daily.
I waited in anticipation for my “new normal,” almost like it’s a title worthy of celebrating, or it would give me this great clarity of what to expect when living with MS. My brain slowly started ignoring the tingling fire that blanketed my legs, and some sensation came back. But after six months, my legs were far from feeling back to “normal,” and my other symptoms came in waves.
I asked my neurologist whether my latest relapse symptoms would heal or if this was my “new normal.” She told me that, unfortunately, I was living my new normal.
I grieved my previous life and the future I lost.
Learning my symptoms are permanent provided no emotional relief. The day marking my “new normal” started the depression stage of my grieving process. It shattered me to hear my symptoms are permanent. I recoiled because I knew our life had to change, and I wasn’t ready to cope with that reality.
I honestly thought that my grit and internal strength would be enough not to allow MS to affect our life. A mindset that makes me cringe now. It’s toxic and disrespectful to everyone else living with MS to think that a positive attitude and some determination will give you control over your symptoms.
Yes, a positive mindset does help, and we need to hope that things will be better and have some sense of control to move forward. But if you think you have the power to cure your symptoms with your mind alone, it’s going to be devastating each time your symptoms “win.” At least, it was for me.
Not being able to control my MS made me feel weak.
The realization that I was living my “new normal” caused shame and guilt to flood my thoughts. I could no longer push through my hard days. My gas tank was empty. My disease was absolutely going to affect my husband, my family, friends, and coworkers.
Over time, I learned that strength is accepting your disease and aligning your lifestyle to your emotional and physical needs.
My happiness returned once I accepted my disease, and we started slowly changing our lifestyle to meet my needs better.
MS doesn’t prevent me from doing or accomplishing anything. It does make some things extremely difficult. You have two options every day.
- You can suffer through your symptoms.
- You can accept your disease and align your lifestyle to increase your quality of life.
Sometimes, you’ll find that suffering through the symptoms is necessary or worth it. For example, I wanted to finish my doctorate. The education, the title, the sense of accomplishment were important to me, and this was a goal I didn’t want to give up on after being diagnosed with MS. I pushed through the symptoms chasing this dream caused. You may find this necessary to accomplish your goal or even smaller yet equally important aspects of your life, like seeing your kid’s hockey game or taking a long flight to a romantic location for your anniversary.
You have to decide when suffering is the best option because you can’t live every moment in pain or discomfort, and you only have some much energy each day.
Aligning your lifestyle to your needs is the most significant expression of acceptance of your disease. My mental and physical health improved when I started allowing myself to say “no” and choosing my well-being.
My name is Alexys, and after a long process, I accept that I’m living with Multiple Sclerosis.
Part five of my story will be released in the next week. Please follow my blog to receive a notification when it’s posted or keep checking back.
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