A Quick Hello

14 Mar

img_9550.jpgRight, well this is my first ever attempt at a blog… I’ve never really known how to go about them, but here goes!

I’m not sure that how I’m going to be writing is in fact a blog, as it is more a diary of reflection – covering events in my life that are associated with my growth disorder, Pseudoachondroplasia. Either way, welcome to my ramblings!

I decided that I would write about my experiences of having Psach (I can’t keep writing the whole word, pseudoachondroplasia… it’s long!) as I had the parents and grandparents of a little girl who had just been diagnosed with the disorder contact me on Facebook.  They had recently had the shock of being told their gorgeous little daughter has a growth disorder and that her life may not be the same as most other children… so naturally, they wanted to gain as much information about the condition as they could, and speak to as many others who have Psach as they could.  They wanted to know all that they could to support their daughter.  I have spoken with them all quite a bit since they first made contact and explained to them much of my experience, and I hope that this has helped them in any way possible.  However, discussing the matter with the family lead me to look for other’s experiences online… and I couldn’t find any! Not one person with Psach has written their experiences of the condition online (Well, not that I can find anyway!). So… I thought I’d give it a go.     🙂

I’m Ruby, a woman in her twenties, living in England (UK) and I have Pseudoachondroplasia…

I’m not quite sure where to start from, so it’s just this little hello message for now.  I’ll write again soon!


p.s. If anyone wants to contact me regarding anything I post – please feel free to comment on here, or send me an email to: rubysallen@hotmail.com Or, tweet me @rubysoniaallen

p.p.s. If you’re wanting to read this blog to see how the condition has played a part throughout my life, you’ll need to start from the earliest posts for chronological order!


Self Acceptance and Relationships.

3 Jan

Just over five years ago, I wrote a post about how having pseudoachondroplasia affects me emotionally, and about my attempts to accept myself as someone with pseudoachondroplasia and all of its complications (True Emotions & Self Acceptance). Within that post, I had written about how I’d avoided relationships, and my fears surrounding relationships:

…I don’t see myself as an attractive girl, so why would any guy? And how will I know if someone can genuinely look beyond my appearance, or just doesn’t want to offend me? I aim to overcome this ‘fear’ as I know most people are self doubting to some extent, but I do think it’s an area of life which would be a little easier if PSACH hadn’t led to me having a fairly poor body image of myself. I’ve also fretted in the past that if I were to be in a relationship, would I be a burden to my partner? For instance, I couldn’t go on a skiing holiday (well, not to ski, anyway!), nor could I go on bike rides, for example. Then there are the times I will HAVE to go into hospital… Would I want to impose my recovering self on someone who could be getting on with their life in the ‘normal’ way? I don’t know…

Well, now I’d like to return to that topic. I have met a man who has, and is, shifting my views on how relationships can work with this condition – and is also helping me to accept myself, and my condition more fully.

We met online, and whilst he knew my height, the reason behind it never came into conversation, and I didn’t bring it up (When do you bring up such a thing? Should you have to? Both questions I had always asked myself…). During our first date, I mentioned how I write a blog – and that’s when I felt I should “own up” about the condition. So I did. And as I did so, I avoided looking at his face, fearful that the words ‘disability’ and ’dwarfism’ would put an end to any interest that he may have had in me, and it would be written all over his face (if, he hadn’t already been put off by my physical appearance in real life, I thought…). His reply was not one of disgust as I had feared, nor one of pity or patronisation as I have previously experienced with other people, but he was genuinely interested to know more. He wanted to know my experiences, to know about the people I’ve met through the blog, he wanted to read the blog. I. Have. Never. Felt. So. Relieved. As we spent more time together, I became more comfortable letting him know my limitations caused by the condition, and he became more comfortable asking the questions he wanted to ask. Now, a few months later, he knows I have huge body confidence issues, he knows I will need many more surgeries, he knows I struggle with managing pain on a daily basis, and he knows that having this condition bothers me in many ways.

He accepts this. He accepts me. He is helping me to accept myself and my condition:

He has even said that he knows I don’t see what he sees in me still, but that he will make it his goal to make me realise, no matter how long that may take.

He has naturally started doing little things that make my life a bit easier; he will carry things I would usually try to carry, to save my shoulders; he will adjust the shower before I use it so I can reach it as I need to; he will, without request, reach things for me if they’re out of my reach…  He doesn’t make a big deal out of these things, nor dwell on the limitations I have because of the condition, he just addresses them with care and consideration.

He has massaged my shoulders on particularly painful days recently, and encouraged me to seek treatment, despite my reluctance to start the ball rolling on another inconvenient pseudoachondroplasia issue being resolved, as he knows the pain needs to be addressed so I can sleep properly/move properly (another blog post to come on these shoulder issues soon…).

Having read the blog post I mentioned I had written a few years ago, he said that my fear of the condition being a burden on the relationship is one I need not have, that he will be by my side through whatever pseudoachondroplasia challenges me with. (We actually had a bit of an emotional moment about this… and I can tell he really means that!)

He has made me realise that having this condition does not mean that I am completely unattractive, nor a burden, nor inadequate. I never thought I would think this way, having always been repulsed by my own body, and fearful of sharing my limitations with someone else, but day by day he is showing me that I was too worried – that whilst pseudoachondroplasia does bring its own challenges, it is not the focus of our relationship, he does not see it as a problem or barrier to ‘us’, just something that’s a small (excuse the pun) part of me, that he accepts entirely. He still wants to learn more, he wants to know how he can help and support me with it all, and that, means the world to me, as a girl who has always tried to hide how I could do with some help… as I genuinely feel that asking him for that help won’t change his view of me one bit. He has made me more comfortable with this condition, and as a result, more comfortable in myself.

Essentially, I have been on a learning curve for the last few months, learning to be open about my condition, my limitations, and my emotions about it all too – to let someone in on the ‘real situation’… and learning to accept that someone else can fully accept all of the above, and not see it as an inadequacy in me, or a barrier to a relationship with me! I wanted to share all of this positivity, as I know I could have done with reading something like this for the last few years whilst I’ve been trying to improve my self-acceptance, and confidence with the idea of dating/relationships. I wanted to write about this, for anyone who may still be doubtful about dating or relationships, when you have pseudoachondroplasia (or dwarfism more generally)… for anyone who may want, or need, to read some positive experiences about just that…

There are good humans out there, who don’t dwell on our limitations and differences, but accept them as part of us, and can see that there is much, much more to us beyond our condition!  Don’t lose hope when you receive derogatory, ignorant remarks from people (sadly, there are many of those people about!), don’t give up… search for someone who will accept your condition as just a part of you, who will make you feel like you can take on pseudoachondroplasia with them by your side!


Dwarfism Awareness Month, 2018

16 Oct

It’s October again – which means it’s Dwarfism Awareness Month – so, here’s my little post of awareness for 2018 (Note: previous years’ posts summarised and linked at the end of this post for those who may want to read them)!

This year I’m going to be highlighting how people with dwarfism (in particular, pseudoachondroplasia) can lead ‘normal’ lives in terms of careers, and are not limited to those stereotypical jobs many still associate with dwarfism (i.e. actors in pantomimes as one of the seven dwarves, a dwarf wrestler, or some other purely height based ‘entertainment’ type role). This topic was inspired by two recent events;

  1. There has been heated debate about the ‘Extreme Dwarfanator Wrestling Show’ (a touring wrestling show involving people with dwarfism) which has been cancelled in some venues in the UK over concerns of poorly representing people with dwarfism and promoting violence/negative behaviour toward this group of people too. The flip side of that argument came from those involved in the show itself, and others who saw things from their perspective also, that if these individuals have chosen to be involved in wrestling, then they shouldn’t be stopped from doing so because of their height (Personally, I can sort of see what they mean, but equally I think they could do with looking at the bigger picture and the influence that such shows may have on the public’s attitude toward people with dwarfism as a wider group – still, this post isn’t here for me to go on a rant about that – even if their original show title had the word midget in it! 😡). (https://www.bbc.co.uk/news/uk-england-45522480)
  1. I have had someone I considered a friend comment that their first thought when I mentioned doing a particular job was ‘whether I could reach, and would actually be able to do the job’. At the time, I brushed the comment off, but upon reflection, I think that just shows that even those who have had exposure to someone with dwarfism and their life cannot seem to think beyond the disability, and assume that just having dwarfism will stop an individual from working jobs. Something that for the majority of jobs, I personally feel is not the case for people who have pseudoachondroplasia!

Obviously, considering the joint pain that comes with pseudoachondroplasia, it’s unlikely that we (‘we’ being us with this type of dwarfism!) will pursue careers in intensive sports, jobs where standing up for hours on end is unavoidable, or anything where miles of walking each day are required – but, with some careful consideration about how a job role, or the workspace in which a job is done, can be adapted to meet our physical needs, we can set our minds to most jobs – dwarfism does not have to dictate our career choices, and we certainly don’t have to act in a pantomime, or ‘entertain’ average height people with our shorter stature. I’ve spoken with a number of people I know with pseudoachondroplasia, and the belief of the majority* is that we can do anything we set our minds to! To prove that point, I have asked a bunch of people with my condition to tell me about the jobs they’ve had, the careers they’ve led, and the things they’ve achieved that the general public may not think are possible for someone with a condition like ours – here’s a list summarising some of what people with pseudoachondroplasia I’ve spoken to have been doing:

  • Journalist
  • Social worker
  • Computer technician
  • University lecturer
  • Farm hand
  • Manager of television industry training schemes
  • School teacher
  • Digger operator
  • Script writer
  • Nanny
  • TV Production coordinator
  • Actress
  • Business owner
  • Author
  • Music Manager
  • College teacher
  • Event manager
  • Secretary

Some of the people I’ve spoken to also told me about other things they have achieved:

  • Motocross Racing
  • Various degrees in a range of subjects at all levels
  • Various professional qualifications in all sorts of fields
  • Engineering achievements
  • Pilot in training
  • Counsellor in training

… and these are just from the few people I asked. No doubt if I were to ask more, the list would only grow!

So, hopefully this little insight will change the assumptions that many ‘average height people’ make about people with dwarfism regarding their working potential. Obviously for those who have extreme pain daily, working can be more of a challenge in terms of identifying a suitable job, but that can be the case with people of a whole range of disabilities, and personally (not speaking on behalf of anyone else here with this comment..!), I believe that ‘where there’s a will, there’s a way’ and we should be trying to achieve all that we can, rather than dwelling on our physical limitations and thus limiting our own potential!


*I had a response from an individual with the condition that painted a less positive perspective, whereby he felt that people with pseudoachondroplasia should perhaps not aim for what may be their dream job, due to considerations of how the condition may worsen with age and thus affect their ability to work. Whilst I also believe that we must consider how our bodies can physically cope with particular job roles, I personally like to think that with enough adaptation, the majority of careers are not purely a thing to be dreamt of by people with the condition, and that we can usually fulfil job requirements one way or another! Obviously living with pseudoachondroplasia is an individual experience and I cannot speak on behalf of everyone in this post, so I thought I would include this note to make it clear I’m aware that limitations are different due to pain levels/surgeries had, etc. 🙂


**As promised, links to my previous Dwarfism Awareness Posts:

2017: I listed the little ways I have to change my life to live well with pseudoachondroplasia lifewithpseudoachondroplasia.wordpress.com/2017/10/01/dwarfism-awareness-month-2017/

2016: I summarised how my life has included a range of surgeries https://lifewithpseudoachondroplasia.wordpress.com/2016/10/

2015: I highlighted the physical differences that are associated with pseudoachondroplasia https://lifewithpseudoachondroplasia.wordpress.com/2015/10/

2014: I gave a few examples of how the condition impacts my life, in pictures https://lifewithpseudoachondroplasia.wordpress.com/2014/10/

The Social Side of Living with Restricted Growth

16 Jul

Many months ago, I had seen on Twitter that someone else with a growth condition had referenced a paper quoting some research findings about the social experiences of people with restricted growth – today, I finally sat down to read the paper those statistics came from, and so, so much of it resonated with me that I felt I had to write a post for this blog. Not all of the participants in the study that was reported in the paper had Pseudoachondroplasia (a range of restricted growth conditions were included), but many of the experiences described seemed extremely familiar. The paper is called ‘No laughing matter: medical and social experiences of restricted growth’ (Ref: Shakespeare, Thompson and Wright, 2010).

In the paper, the social dimensions of disability are discussed, highlighting issues that people with growth conditions may face beyond the physical limitations often thought of when considering disability. The paper describes how at first sight ‘people with restricted growth do not appear to experience functional limitations, beyond obvious issues of height and reach’, with one participant quote detailing how people assume there’s nothing wrong with her when she’s walking about, but in reality, her hips are really, really painful. This is certainly something I can relate to. Not with my hips (the replacements are still fabulous!) but with my knees, and with my shoulders, and on ‘bad’ days, my wrists and ankles too. I don’t tend to mention the daily pain I get with both of my knees, but taking codeine isn’t part of the average 27 year old’s morning routine, is it? 😉

Further on in the paper, the topic of mental health issues was discussed. Whilst I have been lucky enough not to need anti-depressants at any point in my life, 37% of the study sample had experienced mental health problems, attributed to feelings of loneliness and social exclusion, and to experiences of pain and physical deterioration. I can certainly see how that can happen. I have experienced many lows in life, where I’ve struggled to manage the pain alongside the usual ups and downs of life everyone has anyway. Where I’ve felt that my disability is stopping me from achieving what I most want to in life. I’ve felt the frustrations of not being able to get involved in a variety of social situations – particularly anything sports-based, or even ‘proper nights out’ where I’d need to stand up all night (not that I’d want to do that anymore, I’ve aged too much, but you see my point, these things can bring you down!).  And… where social interactions are a part of life, they’re not always positive ones for people with restricted growth either, which can further contribute to mental health problems. Here are some results from the study participants in the paper:

  • 96% experienced staring or pointing
  • 77% have been on the receiving end of verbal abuse
  • 75% feel the often attract unwanted attention
  • 63% often felt unsafe when out in public
  • 33% have been physically touched by people in public
  • 12% have experienced physical violence

Thankfully, I haven’t experienced all of those issues… but those in red, I have. Staring is almost guaranteed when I’m out in public – I try my best not to let it bother me, but when it’s so frequent, it does become incredibly difficult to sometimes. Verbal abuse – I should probably refer you back to another blog post here; the word ‘midget’ is NOT OKAY. Unwanted attention – yep, lots of it – I don’t want to be the topic of conversation between a group of teenagers in a restaurant, nor do I want to be followed around a club by a creep because I’m ‘so short it’s cute’ (Yes, that’s happened, he had to be removed from the club, as he wouldn’t take no for an answer). Feeling unsafe when out in public? Absolutely. That’s why I won’t go to really busy areas – I’m just not in the average person’s line of sight, and often have to dodge elbows swinging near my face – so busy festivals seem like an accident waiting to happen – otherwise, I may attend one! As for being physically touched in public – yes, that’s happened too. Inappropriately in clubs – “I’m going to pick you up, you’re so tiny!”. In general public spaces – “Can I touch you? You’re lucky!” (what?!). Thankfully, I haven’t experienced physical violence, but as the research shows, and as I’ve heard from others with restricted growth, that’s another social interaction some of us have to ‘deal with’, and we simply shouldn’t have to.

It was just three days ago I noticed myself allowing these negative sorts of social interactions influencing my decisions and choices whilst out in public. I took myself to the zoo (if you’ve never been alone, do!)… but it’s the last week of school, so there were lots of school groups there. I found myself dreading walking through a group of those about 10 years old, for fear of hearing their comments about my height, so I found myself changing direction purely to avoid it. I do tend to avoid putting myself in situations where comments are likely, as it’s easier not to hear them than it is to try and remain positive in the face of these situations.

I suppose what I want to highlight in this post is just that there is certainly more to having Pseudoachondroplasia (and other restricted growth conditions) than the physical difficulties I’ve detailed in most of the posts on this blog. I’ve touched on some of the ‘other challenges’ in other posts (for example, in https://lifewithpseudoachondroplasia.wordpress.com/2013/11/04/true-emotions-self-acceptance/ and https://lifewithpseudoachondroplasia.wordpress.com/2014/10/31/little-things-about-little-me-dwarfism-awareness-month/), but this paper certainly resonated with me, and I’d urge anyone wanting to understand a bit more about living with restricted growth to download it and have a read – there’s a lot more to it than the bits I’ve mentioned here!



‘Pictures of People with Pseudoachondroplasia’…? Here you are!

15 Apr

‘Pictures of People with Pseudoachondroplasia’, ‘Photos of People with Pseudoachondroplasia’, ‘Photo of pseudoachondroplasia woman’, ‘Adult with pseudoachondroplasia photos’… these are the sorts of things people have been searching for which have returned my blog to them. However, whilst my blog has a number of photos of me, as a child and an adult, I’m aware that there aren’t a great deal of full-body photos, which I’m guessing is what people are searching for – as the effects of this condition aren’t seen in my face! So, I thought I’d do a quick post which should provide something more suited to those search terms…

It’s taken me a while to find these photos, as I’ve always tried to avoid full-length photographs being taken (to this day, I’m not particularly accepting of, or confident with the appearance of my body!)… but here are some, as I was growing up, and more recently, that show you how short I am, how disproportionate my body is, how wonky my legs have been – and are – and how sometimes, following surgery, they’ve been straighter! I hope they’re of use to the people searching for such photos!


Dwarfism Awareness Month – 2017 (Part 4)

20 Oct

As the final part of my Dwarfism Awareness Month 2017 blogging, I’m going to list 10 more ways that I live my life a little differently, as a result of living with pseudoachondroplasia… 10 other ways that aren’t ‘just being a bit short’ as many people may initially think is the only difference for someone who has a form of dwarfism. A mixture of some minor changes I make, and some more important considerations and challenges I face, as a way to end the month by highlighting that dwarfism can alter someone’s life in a really broad range of ways… so here goes, the last list of 2017!

22. I operate in slightly different ways when cooking… carrying a pan of water in tiny hands is tricky, particularly when the joints in my fingers and wrist are hurting, so I sometimes have to fill it up and empty it one small jug at a time (or ask someone else to move the pan of water!).

23. Another cooking related one – I’ve been known to take real shortcuts (particularly in the Winter when joint pain gets worse because of the cold, damp weather here in the UK) – shortcuts which mean I don’t have to stand for as long in the kitchen. Ready meals. Pre-chopped veg. The ‘lazy’ options just mean that on the painful days, I don’t have to make the pain worse by standing about in the kitchen!

24. I own a grabber. One of those long stick things, with a handle at one end which can be pulled to grip a claw at the other end… a bizarre item to have about in my home, but it comes in handy in so many situations! Can’t quite reach to re-position curtains if they get caught on the rail? The grabber extends my arms, I can do it myself. Can’t quite reach something I’ve stored on a high shelf? The grabber means I can drag it down myself and it’s one less thing I have to ask for help with. Something has fallen on the floor and my knees are too sore to bend down to pick it up? Use the grabber. You get the idea… it gives me an extra metre or so of reach – and therefore, means I can do a whole range of things myself without having to ask for help! Sadly, it’s no good for changing lightbulbs… I will always need help with that!

25. Much like so many people of restricted, and average, height… I constantly battle with the diet/exercise thing. However, unlike a lot of people who have average bodies, I can’t ‘go for a run’ or cycle, or engage in a whole range of other exercise options to shift the weight. My joints simply won’t take it, and if I push my luck, they can hurt intensely for days. However, with an average sized stomach, I get as hungry as someone of average height. The difference being, they have more height to spread the weight associated with that food quantity across. In essence, I can quickly look very overweight if I eat too much. It’s something I’m currently battling with again – trying to shift some pounds. To look better, to feel healthier, and to be kinder to my joints (the less weight they bear, the less pain there is!). Knowing how many calories I should be eating is a guessing game, even knowing how much I should weigh is a bit of guesswork, as the normal BMI or height/weight charts simply don’t work accurately for someone who is not proportionate in build. So I have to work with what I can see, and currently I don’t like what I see – so I’m trying to do something about it… just slowly, a little at a time, whilst trying not to upset these joints of mine which will soon cause a scene if I overdo it!

26. Talking of things I don’t like seeing, namely – parts of my body, I am forever avoiding full length photographs. I can think of one photo of me where my whole body is in view that I like – all other photos which have my arms, my legs… my whole body in, I can’t stand them. I avoid full length mirrors for the same reason – I don’t like my body, and seeing a reflection or photo of it, to me, is purely a reminder of my short arms, my stubby feet, my wonky, short legs. So please – if anyone is taking a photo with me, if you can remember to try and avoid such photos, I will love you for it. 🙂

27. It isn’t just me I’d rather didn’t have my physical differences highlighted to – I’d rather they were as unnoticeable to others as possible too. Like I said in Part 3 of this year’s posts, I choose clothing to hide my scars, and to try and disguise my curvy back… but I also adjust my posture when I’m around others too. I’ll sit toward the front of a chair, to stop my legs dangling about because they don’t reach the floor so much. I’ll keep my hands out of sight, as I’m aware they look different to the usual delicate hands of a woman. Some of the little things I do I just automatically do now, I don’t have to think about it – but there are some, like this, that I do consciously to try and hide some of my differences.

28. I do a lot of planning. In particular, when I’m travelling somewhere/visiting somewhere new. I check the routes I’ll need to walk to get from A to B, I’ll see whether there are seating options at social venues, I’ll look at all travel options to see which will mean I have to stand/walk for the least amount of time, I’ll even know exactly where I’m going to park if I’m going to a new location that will enable me to be as close as I can to where I want to be before I even get out of the car. People that know me joke that I’m ‘Miss Organised’ – and yes, I am quite the organised type – but in reality, a lot of this planning stems from the need to avoid excessive walking/standing, all to help myself with the joint pain levels!

29. If, as a result of my planning and venue research, I don’t think I’ll be able to do whatever activity/visit whichever place, without needing some help or drawing attention to my physical needs, I do have a tendency to decline invites to places. I’ve avoided gigs at venues where they don’t advertise having seating available. I’ve bailed on weekends away with friends because I know my legs aren’t up to it, and I don’t want to hold them back when I can’t walk as far/for as long, or even for them to have to alter plans to make them meet my needs. I avoid social situations where I just KNOW there’ll be so many people there, there’s bound to be one (inconsiderate) person who feels the need to tell me I’m short/a midget/ask some sort of personal height related question – alcohol fuelled nights out are exactly the kind of thing I dread – there will ALWAYS be questions. Questions to remind me that someone else has noticed my differences, questions that spoil my evening and bring my mood down in seconds, questions that strengthen my disliking of my own appearance. Whilst I hate the fact I still avoid some of the most fun things in life purely to avoid such situations, I cannot always handle the reminders strangers give me, and it seems (at least at the time) worth missing out on the fun just to avoid the comments!

30. Following on from point 29, as something that happens on an almost daily basis, I reckon dealing with comments/questions/staring from strangers deserves a point of its own. Whether it be from a child ‘Mummy, why is that lady so short?’, a teenager ‘wow, look at that midget’, or an adult, without hesitation, looking me up and down with a puzzled expression on their face as I go about my day to day life… or online, on social media/dating apps, where I have continual questioning about whether I am really 4ft 9”? (Why would I make that up?!), or as I recently had, being informed that as I’m under 4ft 10”, I can ‘claim the dwarf label’ if I want. Thanks, rude man! I’m fully aware that I look different, I welcome innocent questions from children (if their parent educates them about differences as a result, rather than encourages jokes about my height… yes, that has happened), but it does wear thin, having to put up with comments/looks from those of an age where it’s no longer acceptable to not be aware of differences/disabilities and act accordingly in your behaviour! I know many people with various types of dwarfism who deal with this daily challenge in a variety of ways, but one thing is for certain – having to put up with this makes us into fairly tough people!

31. The final point of 2017 Dwarfism Awareness Month for me…! I’ve touched on this in a number of previous blog posts, but it is by far the biggest challenge – the life long one – and that is, considering my dwarfism, my disability, in my long term life plans. From planning my career around inevitable surgeries (knee replacements, more hip replacements, possible shoulder surgery…), choosing a house I will be able to move about in day to day, and after surgery, to deciding whether to have children that are biologically mine with or without genetic testing (as there is a 50% chance of passing on my dodgy gene mutation responsible for the pseudoachondroplasia), or to go without children in life/or adopt… everything in my future will have an element of consideration for my condition and how I will be able to juggle the associated challenges alongside the general challenges of life!

The dwarfism won’t go away (sadly!), but far from making me ‘just a bit short’, it does that, and so much more… and I hope that my four blog posts of Dwarfism Awareness Month 2017 have given some insight to those who have read them, about the ways that such a condition can alter someone’s life! As always though, I’ll end this post reminding readers that if you do have any questions related to what I’ve written – or about my type of dwarfism in particular – please feel free to contact me via this blog, or email (rubysallen@hotmail.com) and ask me – after all, it’s an awareness month – a month for sharing the knowledge, so I’d be pleased to receive your messages!


Dwarfism Awareness Month – 2017 (Part 3)

15 Oct

Following on from Parts 1 and 2 of my 2017 Dwarfism Awareness Month blog post (https://lifewithpseudoachondroplasia.wordpress.com/2017/10/01/dwarfism-awareness-month-2017/ and https://lifewithpseudoachondroplasia.wordpress.com/2017/10/08/dwarfism-awareness-month-2017-part-2/), this is the third instalment of my list of ways that I live my life a little differently as a result of having Pseudoachondroplasia.

The focus of the list this week is very much ‘getting dressed’. It seems that just about everything I have to do each morning has been altered in some way to overcome the limitations my body has as a result of pseudoachondroplasia… dwarfism difficulties on the daily!

Week 3:

15. Before I even get to getting dressed, I have to sit down to dry myself with a towel – my balance isn’t good enough to stand on one leg whilst drying the other, as my knees move sideways (inwards). Thankfully, for hotel rooms where there may not be a seat in the bathroom… a toilet (with the seat down!) does the job just fine too!

16. To put deodorant on, I have to crawl my hand up the wall sometimes, to get my arm up high enough. My shoulder is becoming increasingly badly behaved, and painful (it’s one of the joints expected to cause a problem as a result of this condition) so I simply cannot get my arm up high enough without some support any more – the same reason even some of the middle-height shelves in shops are now out of my reach too!

17. For the same ‘dodgy shoulder’ reason, I lay down to blow-dry my hair. I can’t get my arm up without weight in my hand, so holding a hairdryer and holding my arm in the air for some time just is not going to happen! So, I lay on my bed, with my head near the edge – and gravity helps me hold the hairdryer up near my head… my shoulder still hurts, but at least I don’t have to go out with wet hair each morning!

18. Bras. I have to do that ‘do it up at the front and shimmy it around my body’ thing. The movement in my shoulders is so limited that I simply couldn’t reach to do up the clasp behind my back. It’s for this same reason that I have to select clothing with some thought as to whether or not I can do up the zip/buttons on it… any sort of clasp/button/zip at the back of a top or dress, or even one at the side, means I can’t get dressed with ease, so I do tend to stick to ‘pull it on’ stretchy fabrics.

19. If I’m wearing trousers, I have to sit down to put them on (none of this stand and put one leg in at a time thing, not with my lack of balance!), or if it’s a dress, I often put it on by stepping into it, as my shoulders won’t let me reach up to put a dress on over my head. I’m working on the range of movement in my shoulders, but I’m yet to get dressed ‘normally’!

20. On particularly painful days, I cannot reach down to my feet to put on socks or shoes… so I have to rest my feet on something closer to my body and put them on whilst seated. It does mean for people who have a ‘no shoes in the house’ policy, that I will need to sit on your floor by the door before I can leave, as it’s the only way I can get my shoes back on!

21. My choice of clothes is not dictated purely by which I will be able to alter to fit my body, nor by which items of clothing I will be able to fasten easily… but when I’m out shopping – I am very aware of which types of clothing may hide features of my dwarfism that I still feel very uncomfortable about, or which I may want to avoid buying because they put my legs/scars in clear view of others – and I can do without the extra attention! For example, it’s rare that I will wear shorts, or a skirt/short dress without tights or leggings – whilst so many people tell me I should be proud of my collection of scars that cover my legs, as they show what I’ve gone through – I see them as a reminder of my differences, so I’d rather they were hidden as much as possible. And skirts can accentuate my super-curved spine if I’m not careful, as there can be too much of a gap between my back and the waistband of the skirt. I also tend to opt to wear longer sleeved tops, as I really hate my upper arms – they’re short, and bulky (not just because I need to go on a proper diet! but because that’s how our arms are, when we have pseudoachondroplasia). It’s all of these factors that result in me being far from the stereotypical woman… I hate clothes shopping!


I’ll post Part 4 within the next week or so, which will contain the remaining few odd ways I alter my life, and some of the more significant, considerable changes I make because I have dwarfism (some of them perhaps my friends may not even be aware of)… showing, as I always try to, that having dwarfism is more than just being short!


Dwarfism Awareness Month – 2017 (Part 2)

8 Oct

As I said a week ago (lifewithpseudoachondroplasia.wordpress.com/2017/10/01/dwarfism-awareness-month-2017/), for this year’s Dwarfism Awareness Month, I’m listing little ways that I live my life differently because I have pseudoachondroplasia. I posted the first 7 in the original post. So, the next 7, for this week….

8. I open a lot of packaging (including bottles, on occasion) with my teeth… thankfully my teeth seem to take it and are yet to be damaged as a result – but often I don’t have the strength in my hands/fingers to open them the ‘normal’ way! Doesn’t help that my hands are so small, so I can’t get a proper grip around lids!

9. Again because of the small hands – when there is the option, I’ll use smaller cutlery. The average cutlery is designed for bigger hands and makes it tricky to control them! So… if you see me using the ‘wrong’ cutlery in a restaurant for the wrong course, it isn’t just that I’m clueless about cutlery etiquette!

10. I wear shoes meant for children. For girls, or for boys – I don’t really care – but they fit (sort of) the length of my UK size 1 feet. No adults shoes come small enough for these feet… and whether they be shoes for adults or children, none of them are really wide enough as the feet of people with this condition are veryyyy wide – so whatever I’m wearing, my feet have been squeezed in! A small positive of having dwarfism? Cheaper shoes. 😉

11. And clothes… I have lots of them adjusted. From trousers that are WAY too long, to sleeves on jackets and coats which fall way below my hands (short arms, as well as short legs are part of this condition!), I’ve had many trips to tailors over the years! An expensive requirement of living with dwarfism… unless you’re happy to look as though your clothes are drowning you!

12. With clothes in mind! Sometimes there isn’t the time, or I don’t want to spend yet more money on alterations… so I come up with faster solutions! I often roll up sleeves on shirts/tops/jumpers… and have discovered that cutting the ends off flip-flops is a far easier option than trying to cram my wide feet into children’s Summer shoes! Tricky trying to look presentable this way though!

13. It isn’t just clothes I come up with quick solutions for where alterations in my life are required! Sitting at a desk for my PhD research most of the time, I have a chair designed for my body – the seat depth is shorter so that the backs of my knees don’t rub against the seat – the arm rests can be adjusted to be higher so my short arms have somewhere to rest… but if I’m to sit at the correct height for the desk, my feet still don’t touch the floor! There are options for foot rests specifically for desk work, but I don’t use one… stacks of books, or a cardboard box work equally as well – and I’ve been known to use both!

14. This one is probably one of the stranger ones… I have my nails ‘done’ (acrylic nails) regularly. Not because I want crazily long nails, nor because I want them to be glitzy… but because naturally, my nails are super wide (to match my wide fingers), and as a result, are flat. Because they’re flat (without that natural curve of the average fingernail…) when they grow, they bend and look awful. So, whether or not it fools others into thinking the same, to me, with acrylic nails, my hands appear a little more normal. And with the right colour polish, sometimes the nails make my fingers seem a bit longer too (or so I think…)!


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