Goth fashion tips for Ehlers-Danlos Syndrome

A woman wearing a dramatic black hooded jacket typing on a laptop
Skingraft hoodie, INC shirt, Fisherman’s Wharf fingerless gloves

My ideal style could perhaps be best described as “goth chic”—a lot of structured black somewhere on the border between couture and business casual—but because I have Ehlers-Danlos Syndrome, I more often end up wearing “sport goth”: a lot of stretchy black layers in washable fabrics with flat shoes. With great effort, I’ve nudged my style back towards “goth chic,” at least on good days. Enough people have asked me about my gear that I figured I’d share what I’ve learned with other EDS goths (or people who just like being comfortable and also wearing a lot of black).

Here are the constraints I’m operating under:

  • Flat shoes with thin soles to prevent ankle sprains and foot and back pain
  • Stretchy/soft shoes without pressure points to prevent blisters on soft skin
  • Can’t show sweat because POTS causes excessive sweating, also I walk a lot
  • Layers because POTS, walking, and San Francisco weather means I need to adjust my temperature a lot
  • Little or no weight on shoulders due to hypermobile shoulders
  • No tight clothes on abdomen due to pain (many EDS folks don’t have this problem but I do)
  • Soft fabric only touching skin due to sensitive easily irritated skin
  • Warm wrists to prevent hands from losing circulation due to Reynaud’s or POTS

On the other hand, I have a few things that make fashion easier for me. For starters, I can afford a four-figure annual clothing budget. I still shop a lot at thrift stores, discount stores like Ross, or discount versions of more expensive stores like Nordstrom Rack but I can afford a few expensive pieces at full price. Many of the items on this page can be found used on Poshmark, eBay, and other online used clothing marketplaces. I also recommend doing the math for “cost per wear” to figure out if you would save money if you wore a more expensive but more durable piece for a longer period of time. I usually keep clothing and shoes for several years and repair as necessary.

I currently fit within the “standard” size ranges of most clothing and shoe brands, but many of the brands I recommend here have a wider range of sizes. I’ve included the size range where relevant.

Finally, as a cis woman with an extremely femme body type, I can wear a wide range of masculine and feminine styles without being hassled in public for being gender-nonconforming (I still get hassled in public for being a woman, yay). Most of the links here are to women’s styles, but many brands also have men’s styles. (None of these brands have unisex styles that I know of.)

Shoes and socks

Shoes are my favorite part of fashion! I spend much more money on shoes than I used to because more expensive shoes are less likely to give me blisters. If I resole/reheel/polish them regularly, they can last for several years instead of a few months, so they cost the same per wear. Functional shoes are notoriously hard for EDS people to find, so the less often I have to search for new shoes, the better. I nearly always wear my shoes until they can no longer be repaired. If this post does nothing other than convince you that it is economical and wise to spend more money on shoes, I have succeeded.

Woman wearing two coats and holding two rolling bags
Via Spiga trench, Mossimo hoodie, VANELi flats, Aimee Kestenberg rolling laptop bag, Travelpro rolling bag

Smartwool black socks – My poor tender feet need cushiony socks that don’t sag or rub. Smartwool socks are expensive but last forever, and you can get them in 100% black so that you can wash them with your black clothes without covering them in little white balls. I wear mostly the men’s Walk Light Crew and City Slicker, with occasional women’s Hide and Seek No Show.

Skechers Cleo flats – These are a line of flats in a stretchy sweater-like material. The heel can be a little scratchy, but I sewed ribbon over the seam and it was fine. The BOBS line of Skechers is also extremely comfortable. Sizes 5 – 11.

VANELi flats – The sportier versions of these shoes are obscenely comfortable and also on the higher end of fashion. I wore my first pair until they had holes in the soles, and then I kept wearing them another year. I’m currently wearing out this pair. You can get them majorly discounted at DSW and similar places. Sizes 5 – 12.

Stuart Weitzman 5050 boots – These over-the-knee boots are the crown jewel of any EDS goth wardrobe. First, they are almost totally flat and roomy in the toe. Second, the elastic in the boot shaft acts like compression socks, helping with POTS. Third, they look amazing. Charlize Theron wore them in “Atomic Blonde” while performing martial arts. Angelina Jolie wears these in real life. The downside is the price, but there is absolutely no reason to pay full price. I regularly find them in Saks Off 5th for 30% off. Also, they last forever: with reheeling, my first pair lasted around three years of heavy use. Stuart Weitzman makes several other flat boots with elastic shafts which are also worth checking out, but they have been making the 5050 for around 25 years so this style should always be available. Sizes 4 – 12, runs about a half size large.

Pants/leggings/skirts

A woman wearing black leggings and a black sweater
Patty Boutik sweater, Demobaza leggings, VANELi flats

Satina high-waisted leggings – I wear these extremely cheap leggings probably five days a week under skirts or dresses. Available in two sizes, S – L and XL – XXXL. If you can wear tight clothing, you might want to check out the Spanx line of leggings (e.g. the Moto Legging) which I would totally wear if I could.

Toad & Co. Women’s Chaka skirt – I wear this skirt probably three days a week. Ridiculously comfortable and only middling expensive. Sizes XS – L.

NYDJ jeans/leggings – These are pushing it for me in terms of tightness, but I can wear them if I’m standing or walking most of the day. Expensive, but they look professional and last forever. Sizes 00 – 28, including petites, and  they run at least a size large.

Demobaza leggings – The leggings made mostly of stretch material are amazingly comfortable, but also obscenely expensive. They also last forever. Sizes XS – L.

Tops

Patty Boutik – This strange little label makes comfortable tops with long long sleeves and long long bodies, and it keeps making the same styles for years. Unfortunately, they tend to sell out of the solid black versions of my favorite tops on a regular basis. I order two or three of my favorite styles whenever they are in stock as they are reasonably cheap. I’ve been wearing the 3/4 sleeve boat neck shirt at least once a week for about 5 years now. Sizes XS – XL, tend to run a size small.

14th and Union – This label makes very simple pieces out of the most comfortable fabrics I’ve ever worn for not very much money. I wear this turtleneck long sleeve tee about once a week. I also like their skirts. Sizes XS to XL, standard and petite.

Macy’s INC – This label is a reliable source of stretchy black clothing at Macy’s prices. It often edges towards club wear but keeps the simplicity I prefer.

Coats

Mossimo hoodie – Ugh, I love this thing. It’s the perfect cheap fashion staple. I often wear it underneath other coats. Not sure about sizes since it is only available on resale sites.

Skingraft Royal Hoodie – A vastly more expensive version of the black hoodie, but still comfortable, stretchy, and washable. And oh so dramatic. Sizes XS – L.

3/4 length hooded black trench coat – Really any brand will do, but I’ve mostly recently worn out a Calvin Klein and am currently wearing a Via Spiga.

Accessories

A woman wearing all black with a fanny pack
Mossimo hoodie, Toad & Co. skirt, T Tahari fanny pack, Satina leggings, VANELi flats

Fingerless gloves – The cheaper, the better! I buy these from the tourist shops at Fisherman’s Wharf in San Francisco for under $10. I am considering these gloves from Demobaza.

Medline folding cane – Another cheap fashion staple for the EDS goth! Sturdy, adjustable, folding black cane with clean sleek lines.

T Tahari Logo Fanny Pack – I stopped being able to carry a purse right about the time fanny packs came back into style! Ross currently has an entire fanny pack section, most of which are under $13. If I’m using a backpack or the rolling laptop bag, I usually keep my wallet, phone, keys, and lipstick in the fanny pack for easy access.

Duluth Child’s Pack, Envelope style – A bit expensive, but another simple fashion staple. I used to carry the larger roll-top canvas backpack until I realized I was packing it full of stuff and aggravating my shoulders. The child’s pack barely fits a small laptop and a few accessories.

Aimee Kestenberg rolling laptop bag – For the days when I need more than I can fit in my tiny backpack and fanny pack. It has a strap to fit on to the handle of a rolling luggage bag, which is great for air travel.

Apple Watch – The easiest way to diagnose POTS! (Look up “poor man’s tilt table test.”) A great way to track your heart rate and your exercise, two things I am very focused on as someone with EDS. When your first watch band wears out, go ahead and buy a random cheap one off the Internet.

That’s my EDS goth fashion tips! If you have more, please share them in the comments.

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