November 11, 2022
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Collage design by Ryan Hamsher; photo provided by Ardra Shephard
Welcome to Ask Ardra Anything, an advice column about life with multiple sclerosis from blogger Ardra Shephard. Ardra has lived with MS for 2 decades and is the creator of the award-winning blog Tripping on Air, as well as the hashtag #BabesWithMobilityAids. Got a question for Ardra? Reach out on Instagram @ms_trippingonair.
Teresa N and Una L ask: Can you talk about grieving the losses we’ve all experienced due to MS? And how do I stop grieving?
When I was first diagnosed with multiple sclerosis (MS), I cried every day for months, mourning the health I once had and the life I thought I was going to have. I was convinced I’d never be happy again, but over time my grief subsided. I understood that I wouldn’t lose everything MS could take from me all at once, and I believed I had come to terms with my new reality and accepted life with MS.
Grief is the natural human response to loss that we all experience at different points in our lives. When grief links to a singular event, like the death of a loved one, recovery from grief takes time, adjustment, and acceptance.
But MS is not a singular event.
I was surprised to find myself shedding tears about my MS 5 years after my diagnosis, then 10 years, then 20. But vision loss is not the same as bladder dysfunction, which is completely different from the loss of mobility or the losses that come with pain, spasticity, or a dozen other difficulties. Having MS can feel like getting a new disease at any time. When MS takes and takes, it can feel like there isn’t time to finish grieving one loss before being confronted with another.
I’d been handling MS like a boss for so long that everyone assumed I had it under control.
I’m almost always thinking about MS. My preoccupation is not a poor-me rumination but a practical life skill. When you have to pay attention to how you move for fear of falling, plan your outings based on reliable bathroom access, or avoid making plans because you don’t know how fatigue will impact you, your day can be full of constant reminders of what you’ve lost. There’s no vacation from MS. Sometimes, there’s not even a pause, and constantly confronting what MS has cost us can keep us in a state of perpetual grief.
Nobody wants to feel bummed all the time, even if we have good reason to be. Chronic illness can provoke, extend, or increase grief, but it doesn’t mean you have to dress in black and be sad every day. Here are some practical strategies that have helped me manage my own episodic grief.
For many years, the most unhelpful narrative I told myself was some version of “I got this” or the popular “I have MS, but MS doesn’t have me.” I regularly reassure others I’m OK because I don’t want to cause unnecessary concern. Many of us feel pressure to be “palatable patients” or to live up to an ideal of strength and resilience when we worry our vulnerabilities might make us difficult to be around. You are allowed to acknowledge how hard life can be. Trust that the people who care about you can support you when you are in pain.
“Fight MS” is a more popular slogan than “Learn to live with MS,” but it isn’t always helpful. My own “fight” became an impossible determination to return to the health I once had. It was a struggle that just kept me focused on what I could no longer do. My grief was prolonged by my refusal to accept the changes that had happened to me.
Eventually, I learned that acceptance isn’t the same as giving up.
When I accepted that I needed to use a rollator walker, my health improved. The extra support meant I had greater endurance and could take more steps throughout the day. When I accepted that I needed to try intermittent self-catheterization, I stopped having accidents, I was able to spend more time outside the house, and I started having fewer urinary tract infections. Acceptance doesn’t mean you’re cool with having MS. It means you acknowledge that MS is real and you understand what’s going on — and that’s when the action begins.
Community support is an essential part of coping with grief. When we are first diagnosed, it’s easy for our friends and families to recognize that we are in crisis and that we may need extra hugs and hand-holding. When I lost the ability to walk without a mobility aid 15 years after my diagnosis, I came apart. I didn’t understand why nobody seemed to notice, but I’d been handling MS like a boss for so long that everyone assumed I had it under control. It wasn’t until I called my dad sobbing that I realized I had to ask for help.
Loneliness exacerbates grief. Finding others who are navigating the same losses will help you to feel less isolated and alone.
When I’m really wigging out, I tell myself, It won’t always be like this. Find the words that you can count on in a crisis. Write down your mantra and put it where you will see it regularly.
Journaling helps us process loss and can even improve our physical health. More than once, I have cried tears of frustration over spilled milk, spilled coffee, and spilled wine. I spill a lot of things. Journaling helped me understand that I wasn’t crying over wasted milk or even wasted wine. My angry tears were really about not having the strength to clean up the mess. I was worried about the loss of dexterity that caused the drops in the first place. I was terrified about losing the ability to perform basic tasks.
I spent decades studying classical voice. Singing was inherently tied to my identity. MS took away my stamina and breath before it quieted my voice with dysarthria. When I stopped being able to sing, I started to write. I realized that it wasn’t singing that was saving me. It was how I felt when I was singing. I liked performing, being creative, using my voice, and communicating. I learned I could get a similar high from writing. If MS takes something you love, try to figure out the feelings attached to your loss, and then see if you can source the same sentiment some other way.
Every time I opened the closet and caught a glimpse of the red-soled stilettos I’d purchased in Paris, I felt a stab of sorrow. Holding onto my Louboutins in the hopes that I might one day wear them again kept me in a state of grief, wishing for a past version of myself. Acceptance was impossible. Those beautiful shoes that used to bring me joy were now painful reminders of what I had lost, and it was a relief to be rid of them. Hanging onto my heels wasn’t going to bring back my ability to walk in them. I told myself that if ever I found myself able to handle heels again, it would be a perfect excuse to splurge on a new pair.
Grief is the appropriate reaction to profound loss. Depression is a serious medical condition that requires treatment. Learn the signs and symptoms of clinical depression. If you feel your grief is unrelenting, interfering with your relationships, or difficult to cope with, speak with your doctor.
The only way out of grief is through it. As long as MS continues to take, the cycle of grief will continue. The good news is that we can learn to grieve better. In my experience, validated feelings get managed, and giving myself permission to freak out from time to time lets me acknowledge my losses so that I can count my blessings. Grieving openly allows me to receive love and support from my community and lets me know I’m not alone.
I have progressive MS. I’m going to come apart from time to time. The difference is that now I know I can be put back together again.
Medically reviewed on November 11, 2022
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