My Former Self: Reflections from the Community

For those with MS, it can be difficult to adapt to the physical and emotional changes that can accompany life with a chronic, debilitating condition. For some, the real pain of MS comes from not being able to be the person you once were, and one of the most difficult adjustments is the loss of your former self. For many, it can be extremely difficult to come to terms with losing this version of themselves, and some may even find themselves mourning that loss. We recently asked members of the MultipleSclerosis.net community to reflect on losing their former self and to share what they feel they miss the most. The responses were incredibly moving and emotional. A sampling of these thoughtful submissions is below.

Being physically unable to do the things you love

Several members expressed that the symptoms of MS, including lack of energy, coordination issues, and other physical impairments, have prevented them from physically doing the things they used to love and enjoy. Whether it be playing with kids, participating in sports, or enjoying a favorite hobby, MS has physically prevented many of those with the condition from participating in activities that are central to their sense of being. Losing the ability to engage in these activities can feel like losing touch with a former self.

“I miss me. I miss my former physical abilities. I miss the me that could run, jump, and dance. Heck, I miss the me that could walk unassisted without my little old lady walker/rollator. I miss days without bladder infections. I miss not having fatigue and all those other stupid symptoms. I just miss me. MS has robbed me of so much.”

“I miss my energy, my writing skills, my sleep, my ability to clean the house, my memory, and my pain-free days. However, I’m grateful for a husband who cares for me despite his own health problems. He and my brother are my greatest cheerleaders. It helps me to remain grateful for the good things in my life.”

“This is the most difficult part of dealing with MS. I’m not able to express the number of times a day that I think how much I miss me. My energy and sense of humor no longer exist when in pain, along with a lack of restful nights, coordination, balance issues and now memory deficiencies plus other issues.”

“The main thing I miss is my independence, being able to drive. The only thing I use with wheels now is a walker.”

Coping with and mourning the loss of what used to be

Whether the loss of an old self felt like it crept in over a long period of time, or happened quickly overnight, many members shared that losing their old self was like losing a friend or family member. This loss often comes with a mourning process and mental adjustment that many find challenging, no matter how long they’ve been battling MS or the changes it can bring.

“I am a shell of the person I used to be and that hurts more than my body. THAT girl was FIERCE – a LION! THIS girl is a mouse – afraid of her own shadow. I feel trapped, longing for the days of feeling free. Don’t get me wrong, I’m truly grateful for the life I’m able to lead and live now, but it sure would be nice to step outside of this body and rendezvous with the fierce and fab me just for a week or two.”

“I keep looking every day for a glimpse of ‘her’.”

“I know my husband and family miss the old me, but no one can know how bad I miss me.

“It’s just like mourning the loss of a good friend.”

“I felt like I went through a grieving process for my old self. I still occasionally feel it when a new symptom develops.”

“Almost everything has changed, the personal changes are difficult, the interpersonal changes are devastating.”

Finding and accepting a new normal

One of the biggest challenges of losing a former self is to try to find a new normal. For some, limitations have become common, and they expect to make adjustments. For others, roadblocks may come up unexpectedly and lead to incredible frustration. No matter what stage you’re at with your MS, trying to find your new normal and learn what good days and bad days look like can be a lifelong, tumultuous process. Acceptance may be easier for some, and much more challenging for others. However, it’s important to remember that there is no right or wrong way to feel and navigate through this process.

“There’s so much that has changed, and I cannot accept it a lot of the time. Stupid little things I cannot do anymore or it’s so much more difficult that it’s infuriating! It’s hard to let go of who you were and find a new you.”

“I try often to be me, but the new me is not the same as the old me that had fun…. having fun now is a good day with minimum pain and energy to go to the grocery store.”

“Even on my ‘good days’ I’m still not the old me.”

“I miss walking independently without a walker. I miss dancing. I miss life without MS, BUT I am so thankful of the person that I have become through having these afflictions. After having MS for almost 19 years, I’ve learned it’s all about perspective.”

“Life is definitely ‘before MS’ and ‘after’. I can remember loving summer, roller skating, riding my bicycle, being super tanned from being outside a lot. I remember running and wearing high heels (oh I loved those high heeled boots) … but now I can’t take the heat. I can’t balance on a bicycle; I can’t balance in heels or on skates. Some days I feel amazing, and I remember what it used to be like.”

As shown in these heartfelt responses, feeling like you’ve lost an old self or an old friend is not uncommon with MS. Physical changes, mental adjustments, and trying to accept a new normal are all aspects of losing and grieving a life before MS. No matter where you’re at in this process, however, it’s important to remember that you are not alone and that there is no right or wrong way to feel and cope.

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