MS Advocate Muskaan Finds Strength in Hobbies, Community, and Giving Voice to Lived Experiance
Sydney, Australia – Muskaan, a person living with Multiple Sclerosis (MS), is championing the importance of lived experience in medical research and support, finding solace and purpose through self-care and active participation in initiatives like the Lived Experience Expert Panel (LEEP) facilitated by MS Australia.
Diagnosed with MS, Muskaan has remained relapse-free since beginning treatment with Ocrevus.While experiencing ongoing symptoms including pins and needles, muscle weakness, aches, and significant fatigue, she actively manages her condition through a combination of personal hobbies and professional support.
“Reading, dancing, singing (quite horribly), building Lego sets, solving jigsaw puzzles… all of it recharges me,” Muskaan shares. “And more frequently enough, I find the best company is just me by myself.”
Recognizing fatigue as her biggest challenge – a shutdown of both body and brain that exacerbates anxiety – muskaan recently completed a fatigue management course offered by MS Plus.”It’s a little freeing to be better prepared for what I cannot avoid with MS,” she stated.
Beyond personal coping strategies, Muskaan actively seeks out resources promoting open conversations around mental health, neurodiversity, and inclusion, highlighting podcasts like ‘But you look so good,’ ‘So we’ve been told with Sahaj Kohli,’ and ‘The Mel Robbins podcast’ as favorites.
Muskaan’s commitment extends to actively shaping MS research and support through her involvement with the LEEP. She contributes to feedback on research grants, co-design projects, advisory groups, stakeholder meetings, and research study groups.
“Being part of the LEEP is giving my experience meaning,” muskaan explains. “It helps me see that my story… can make a difference.” She praises the LEEP community as a “safe, confidential, no-judgement space” facilitated with “kindness, clarity and respect” by katie, Christy and Sarah.
“Living with MS isn’t easy,but it’s real and it’s mine,” Muskaan concludes. “I have learned that it means choosing to live fully, just differently. And if my story can make one person feel less alone, then it’s worth sharing.”
