As a woman with FSH Muscular Dystrophy, one of the most irritating aspects of having the condition and one of the most fundamental psychological hurdles along the path to getting on with enjoying one’s life probably also ranks among one of the most trivial in the grand scheme of things. But I am sure all fellow female sufferers of FSH will know exactly what I mean when I refer to the daily “battle with the bra straps!” The irritating and undignified yanking up of a bra-strap that just won’t stay in place on shoulders that are bereft of vital muscle bulk has got to be the disabled world’s equivalent of the Chinese water torture: drip, drip, drip, yank, yank, yank, every few minutes, day in, day out. A constant reminder, if one were needed, that one’s body does not conform with the norm. No designer takes winging scapulae into account when creating all that beautiful, lacy, feminine lingerie so depressingly aimed at other women. It’s funny how the little things in life can often be the most upsetting...

In the twenty-two years since I was first diagnosed with FSH, I have experimented with various tactics to try to resolve this problem for myself and to give myself the same options as other young woman, and now as a woman in my forties, when choosing clothes and expressing myself through what I wear, without being restricted by fear of the dreaded droopy strap syndrome. Here are a few tips that I have picked up which you, or someone you know, may find useful:

• Safety Pins: The obvious, and most primitive, solution – tiny safety pins placed at the top of the bra strap to hold said strap to the shoulder seam of whatever garment you happen to be wearing. A simple tactic, but one that I soon found had several flaws, not least that it was pretty damn tricky to put the pins in the right place in the first place, and several attempts would be needed to avoid a ghastly lop-sided, bunched-up look. Another flaw is, of course, the inevitable holes in your clothing, which cannot be avoided. A bigger downside still is that, once in place, the pins allow no room for your clothes to move with your natural shoulder movement, which can be awkward and uncomfortable. Finally, if, like me, you are allergic to cheap metals, be prepared for the odd rash where the pin touches the skin at top of your shoulders.

• Bra Loops: If you are handy with a needle and thread, the more sophisticated version of the safety-pin tactic might be to sew bra loops into all your clothing. Or to get somebody to do it for you. Fiddly, and time-consuming. I never attempted this…

• Crop Tops: The fashion for crop tops in the ‘90s was a temporary source of encouragement and I went through a period of wearing these regularly as they tended to stay in-situe more readily than ordinary bras. The downside, however, is that they offer less overall support. In addition, they are designed to be worn primarily with t-shirts, not delicate or sleeveless summer clothing. Also, having no fastenings, they can be difficult to get on and off.

• Sports Bras: Again, a good solution as most sports bras tend to be front fastening with solid backs. They are also very supportive. However, whilst the sports bra may score highly for being practical and easy to get on and off, it can hardly be described as glamorous or, well, feminine… Not recommended to wear with anything more adventurous than a sweat-shirt, really.

• Bras with Removable Straps: Now we’re getting somewhere. For years, bras with straps that you can detach and re-attach to create a front-fastening cross over effect have been my saviour. The battle of the bra-strap is won in an instant as the straps sit undisturbed between your shoulder blades at the back and are “anchored” in place by the clasp at the front. Of course, there is an element of reaching up behind your back and over your shoulders to put these straps into place, and it may be that some people have lost that range of movement. In which case, discard the straps altogether and go for the strapless option – again, I have experimented with this and found it to be a comfortable provided that you have a well-fitting bra and depending on the extent to which your scapulae move and wing.

• Rear-Fastening Racer-Back Bras: My most recent discovery! Thank you M&S! At last, a nice, feminine, well-shaped and inexpensive bra that solves all my problems. The bra comes in three colours – black, white and natural – and goes on and does up just like a “normal” bra with the added “functionality” of a small clasp fitted half way up the straps at the back which simply clips them together. The straps are thin and comfortable and, unlike straps that are pinned onto your garments, they move with you. And what’s more, they look great. They are slightly easier to manipulate than the detachable straps option but still require a certain element of reaching up behind your back, which, again, may cause problems for some people. But overall, they give a more natural, feminine look than any of the other options I have listed and can be worn with pretty much anything, even the lightest of summer or evening wear.

I have no doubt that this list of tried and tested solutions is far from exhaustive, and I am sure that there are many resourceful women among you who, like me, have tackled this irritant with greater or lesser degrees of success over the years. But hopefully, it is a useful and practical pointer for any young women who may just be starting out on their journey of discovery about how they will live their lives with FSH Muscular Dystrophy as a fellow-traveller. A little guidance on the day-to-day challenges is sometimes the most valuable aid when faced with a life-changing diagnosis. After all, we can only take one day at a time – and the joy of a day without constantly pulling up your bra-straps is not to be underestimated…!