Dressing for the Life I Once Had
/ Coping with Grief : Litsa
By Jessie Haviland
Jessie Haviland lives in Baltimore, MD with her husband, cat and two dogs. She’s a lover of secondhand shopping, former professional musician and creative arts therapist, and competitive karaoke champion. She is pursuing her MSW at University of Maryland, Baltimore and wildly grateful to be interning with What’s Your Grief.
I just want to be seen. Either how people used to see me, or the person I’ve become – I don’t know. Whether it’s the death of a loved one, the end of a relationship, or the diagnosis of an illness, after a major loss we're no longer that same person. It took six months of building up until it dawned on me: I want to be seen as attractive; I want to be seen as fashionable; but really, I just want to be seen, period.
Fashion has been a love of mine throughout my life. My mom loves to tell this story about how when I was 3 years old, my dad took me shoe shopping for a sensible pair of sneakers for nursery school. I somehow talked to him into buying me pink metallic rhinestone cowboy boots instead. Sensible, they were not, but they certainly were a bold choice, and I loved them dearly. I think that's when I first realized I loved to play dress up and that I would never grow out of it.
I used to get complimented by strangers for what I was wearing, almost daily. And overnight, that stopped. Why? The only thing that changed is I became outwardly disabled and started using mobility aids and walking with more of a limp. Although I always knew something was wrong with my body and immune system, I was pretty high-functioning. I just thought I got sick and injured a lot and that all young people experienced high levels of pain now and again. In early 2019, I began to experience new, strange symptoms accompanied by abnormal bloodwork and debilitating chronic pain. Fast forward to today: I’ve been diagnosed with a rare genetic disorder with a slew of comorbidities. Until now, I’ve only had one minor surgery, a tonsillectomy. Four months ago, I had a major spinal cord surgery to prevent paralysis. In three months, I’ll be having another major surgery, this time on my hip. I fear multiple surgeries a year will now be a common occurrence. I hope I’m wrong.
Getting sick and dealing with all of this – the doctors, the surgeries, the constant pain, the loss of mobility, everything – has taken away my normalcy, spontaneity and the life I once knew. I feel like a stranger in my own body. The grief I’ve felt has been all encompassing. Some days it feels like it will eat me alive. And yet, through all of this, I’ve clung to my sense of style and have gotten dressed every day. It’s the only thing that I’ve been able to hold on to from the life that I once knew. The only thing I still have control over is what I wear. It’s my life preserver in an all-encompassing sea of nonfinite grief.
And yet, it’s been a double-edged sword. This is mostly prevalent with people who already know me or only see me on Zoom, where only my upper body is visible and I look “typical” and not “sick” or “disabled.” People will comment on the fact that I’m wearing makeup or jewelry. It feels like my armor. Like I’m flying under the radar of normalcy, and yet, when it comes up that I’m chronically ill or have a (dynamic) disability, it feels like they don’t believe me. Like they’re saying if I were really, truly suffering, I wouldn’t have the energy to wear makeup. I think a lot of other people navigating grief experience this - that you must be “moving on” or “getting better” or “were never that bad to begin with” when you put effort into your appearance. Little do they know; it just might be the one thing anchoring us to the personhood and life we so desperately yearn for in a world that’s been permanently altered by loss.
Conversely, when I’m out in the world surrounded by strangers, I feel invisible, especially compared to how I felt I was once perceived not too long ago. No one sees that I’m wearing makeup or a great outfit: it feels like they only see my walker and that I’m blocking the sidewalk with my slow pace. It’s hard to be out in the world, both physically and emotionally. I feel myself burning with anger and jealousy as I watch people, carefree, quickly navigating the city with ease. My grief feels so palpable that I’m worried I’m burning up and someone will notice, but they never do. I am now a ghost. But despite that, I’ll never stop dressing for the life and body that I once had.
While recently recounting a particularly hard day, my husband said “I think you just want to be seen.” It was a lightbulb, aha moment for me. Isn’t that what we all want, especially in our grief? No unsolicited advice or comments, just seen for where we’re at on our journey. Not seen as broken or whole, who we once were or who we are now - just really, truly seen for who we are at this very moment in time.
We invite you to share your comments and questions with the WYG community in the discussion section below.
Steve February 13, 2025 at 11:58 am
When my late wife got her first mobility scooter, in her mid-50s, she started dyeing her hair purple. To anyone who asked, she’d say that she wanted to be seen and remembered as the crazy lady with purple hair, not as some old lady on a scooter. It worked.
Julia November 26, 2024 at 7:20 am
Thank you so much for writing, and for articulating how grief feels– your words are beautiful and you are a beautiful soul– I see you. I love your quote, “No unsolicited advice or comments, just seen for where we’re at on our journey.” This is so, so true of a griever! Thank you for the reminder. I’m so sorry for the things you’ve endured. Thank you for your words. -Julia
Jessie Haviland December 7, 2024 at 7:53 pm
Julia, I cannot thank YOU enough for your words- they’re truly appreciated. I think that’s probably something we, as grievers, and humans in general, want.
Anne November 20, 2024 at 2:29 pm
As for the comments… People can be very judgmental and negative. Their comments are actually unnecessary and incorrect and harmful eliminate people like that and the things that they’ve said to you that hurt you (they’re destructive) I also feel like the invisible Man as I’ve aged. There isn’t anything I can do about that I can’t turn back the hands of time I’m just not as attractive as I once was. I don’t take it personally I don’t hate anybody for it I’m just very grounded… I agree with something that somebody else said don’t live for other people, do it for you!
Jessie Haviland December 7, 2024 at 7:29 pm
Hi Anne, thank you for saying that! I always think, did people not hear “if you don’t have anything nice today, don’t say anything at all” growing up?! I appreciate you sharing how you feel in your own life- invisibility isn’t an easy feeling. And you’re right, there’s only so much we can change or control but I can keep finding the joy in doing this special thing for myself.
Elsie November 19, 2024 at 5:37 pm
I have had a very long term, thirty five years health struggle. Not all bad, but long periods of waiting to get well again. I have been interested in FASHION and CLOTHES since I was eleven years of age and now I am sixty something. Ok, so I wear minimal make up now, but my Fashion/Classic Dressing is definitely still fun, worth dressing for and makes me feel good. I have my relaxed comfy dressing days and my more dress up days, still comfy. It’s for me and my husband to enjoy. When I’m outside I am so busy looking around noticing everything, I don’t know if people look at me or not. I am not really bothered about that, just happy to be out and about. So please carry on dressing, for you, your hubby, and enjoy it because living with persistent illness is not fun where as dressing up is. So have plenty of FUN, FUN, FUN. Best Wishes. Elsie.
Jessie Haviland December 7, 2024 at 7:24 pm
Elsie, I love that- it sounds like we are kindred spirits regarding our love of fashion and style! I do continue to get dressed for myself over anyone else- it’s the easiest way to me to feel like myself again when it can be disorienting to be in my own body. I’m trying to care less and less about the way I feel I’m perceived by others. It’ll be a long journey but I’m working on it. I’m so glad you continue to dress for yourself and find the fun and joy in it, as well.I bet you have the most fabulous wardrobe. Thank you for your words and sending big hugs!
View from the cheap seats November 19, 2024 at 2:51 pm
Thank you for this article.
I have found, about 60 yrs old it seems society erases you till you are not seen, even considered. In health care elderly are known as “little grey people.”
I have found unless “it” directly impacts a person they do not care nor will react. Maybe 90% of people’s perspective filters are clogged or need replacing.
Find your tribe/people/tools NOT using age (use mobility issues, adaptive hobbies, participation restrictions, the yellow pages in phone books, libraries, college resources, classes, local groups, beauty supply places, etc… seek senior centers, independent living companies, doctors offices, local council on aging, any disabilities resources online and in person, ask people. You would be amazed who knows who. Network, keep notes, these are your tools. Grants/resources change by the year for many things. The younger populations are now being diagnosed with far more health issues of the older generations.
PS) maybe a fire engine red (or custom paint/wrap job) cane would be racy…..
Jessie Haviland December 2, 2024 at 2:42 pm
Thank you for your thoughtful words. I couldn’t agree more- people often care about something more deeply, or at all, once it’s affected them or someone they love.The thought of people’s “perspective filters” being clogged made me laugh out loud, so thank you for that! Your suggestion of finding community in any and all (unexpected) places is spot on and makes my social network very unique and diverse, which I’m grateful for. And wonderful suggestion- I think it’s finally time I get a bright red, noticeable cane!
Christine November 19, 2024 at 2:04 pm
I see you! And I know you’re fashionable as hell! I say we bedazzle that cane in pink sequins the next time you’re in town so they can’t ignore you. An ode to the boots.
Jessie Haviland December 2, 2024 at 2:34 pm
Thank you, sweet friend! I would love nothing more than to bedazzle a cane at the holidays-ultimate ode to the boots!