Skip to main content
Category

Disability

Sally wearing a black dress smiling to the camera

Sallie’s experience living with a rare disease

By Disability

“I was born with a disability called Holt-Oram Syndrome.  It affects the bones and muscles in my entire upper body and causes Congenital Heart Disease. Don’t worry if you haven’t heard of it, no-one has – even doctors.  It’s really rare.”

This is the explanation that has unintentionally defined my life since I was diagnosed with a rare genetic disorder at the age of seven. A rehearsed statement that has to be delivered repeatedly in the hope of gaining acknowledgement, understanding and assistance.  A disease is deemed ‘rare’ if it affects fewer than 1 in 2,000 people. Holt-Oram Syndrome affects 1 in 100,000. Worldwide, there are millions of individuals with equally rare and unusual conditions.

 

Diagnosis

Pre-diagnosis, we didn’t have a name for it. I just had a sore Little Hand, an achy Big Hand, bony shoulders and a huge scar down my chest.  Getting diagnosed wasn’t at the forefront of the doctors’ minds. They casually asked when I was a child if we’d like to know the name of this weirdo genetic fault.  My mum and dad were eager – naturally, and it was eventually christened ‘Holt-Oram Syndrome’.  Mum remembers feeling relieved – we had a name! But in terms of my care – nothing changed significantly due to the lack of research regarding Holt-Oram.  We weren’t given much information by the medical professionals, either before or after my diagnosis. As far as the consultants were concerned, as soon as my heart was ‘fixed’ (spoiler alert: it didn’t stay fixed for long) it wouldn’t cause any further problems. They assumed my skeletal abnormalities shouldn’t affect me too much (despite experiencing chronic pain in my upper body since childhood).  How far from the truth that doctor’s blasé statements proved to be!

In fairness, the doctors didn’t know.  Holt-Oram is so rare, they couldn’t Google it in the nineties.  Holt-Oram isn’t the only misunderstood and under-researched condition, there are roughly 6000 other rare diseases, affecting an estimated 300 million people worldwide.

Sally wearing a black dress smiling to the cameraIn the past, if a doctor hasn’t heard of Holt-Oram they have generally blamed me by insisting that the symptoms I’m describing are psychological.  Due to such little knowledge, a lot of the paediatric doctors I met refused to accept that their awareness was limited.  This caused a huge neglect in my care, and worsened my symptoms as they remained untreated.  As I’ve got older, awareness has improved and I finally have a great team of specialists – but it’s taken years of fighting to get this far.

Daily life

When someone asks me what’s wrong, or a more specific question: “why don’t you have any thumbs?”, “what are those scars?”, “why do you need an adapted car?” I feel sheer panic at having to explain Holt-Oram and how it affects me.  Most people actually lose interest precisely 0.9 seconds after asking.  I feel as if I’m on a very bizarre quiz show with a buzzer about to go off as I’m quickly stumbling over my words in order to provide you with the knowledge you require.

Trying to explain a rare condition to someone is a stressful challenge, but it’s even more difficult when requiring assistance. If I’m struggling to pack shopping into a bag, I’ll hear myself saying “I’m sorry, I’ve got really useless hands”.  If I desperately need a seat on the train I’ll be trying to explain and apologise, “my spine is really wonky and painful” because it’s easier than giving a full medical description. I find myself apologising a lot, even though it isn’t my fault that I have a rare condition. If people haven’t heard of the condition they’re less likely to take me seriously. It’s hard enough explaining it to medical professionals, let alone the general public.

There are countless other medical conditions that are well known, such as Arthritis or Cerebral Palsy. Those with widely understood and researched conditions don’t experience the same barriers as people with rare diseases.  Even if people don’t exactly know about these conditions they’re aware that they legitimately exist. When I require assistance, I often find it much easier to say “I have heart disease” as this is an illness that everyone is aware of and many are affected by. Something well-known is instantly acknowledged, and I never feel the same need to apologise when explaining a condition like this.

Rare disease day

On 28th February 2022 it is Rare Disease Day.  This is an annual opportunity to raise awareness of overlooked and under-researched rare conditions. With the hope of improving medical representation and access to treatment. Research and awareness for rare diseases and their charities is crucial.  These charities find it more difficult to raise funds due to reduced awareness. Therefore, this causes a lack of medical research.

It is incredibly overwhelming to be aware of every single condition that exists – there’s thousands that I’ve never heard of.  But, you don’t need to be a medical genius to acknowledge that there are millions of people worldwide living with rare diseases. These quirky and unique conditions, and the individuals they affect, deserve recognition!

 

Charlotte Faragher smiles for the camera. She has long dark hair, a white top with blue stripes

Loneliness – A Semi-Paranoid Perspective

By Disability, Undressing Disability

This guest article is written by Charlotte Faragher, a disability rights writer from Oldham. Charlotte, who has had quadriplegic cerebral palsy since birth, has published many articles about disabled dating and intimate relationships.

Loneliness is something that will affect us all at some point in our lives. It is sadly true that irrespective of personal circumstance many of us will have had to tackle this issue with unflinching realism, thanks to Covid 19 and everything that has brought. Yet, I believe there are a particular set of negative voices and presumptions to battle daily if you are a disabled young person in today’s society, as I am.

Charlotte wears a red top, has long dark brown hair and a big smile

One of these facets is having to accept what my future may look like, especially as my parents are currently my main care givers. In the years ahead, without a partner or close friend to take over that role, it is most likely I would have to be placed under the permanent care of the local authority. This personally fills me with deep shame, and I have no doubt it would have a severe negative impact on my physical and mental state, thus exacerbating my feelings of loneliness.

I think in this way because it gives the impression that my disability and all its complex components are just too multifaceted and tiring for someone to handle permanently. Additionally, if I were placed in a care home or supported living at a relatively young age, I would have extra time to stew over the lack of significant life experiences I’ve had. Life experiences that would be hampered further by the reduced freedom to do as I please, when I want.

Although I understand that I can greatly reduce the stress felt by my loved ones by being a positive, thankful light in their lives, it does not mean that the enormity of caring for me will magically reduce as a result.

Romantic Relationships

Furthermore, if I were in a romantic relationship there would inevitably be times when a partner would want to lean on me for support. I worry I would not be able to help them through as effectively as I would like. This could lead to us both feeling more isolated and lonelier.

Friendships

When it comes to friendships, I often struggle to make friends or feel genuinely comfortable in a friendship group for two reasons.

1. I worry that the people I want to befriend won’t fully understand or respect the reality of my disability. I am almost fully competent, educationally and emotionally, yet struggle to do many physical activities that others may take for granted. I also think that people will see me as less intelligent and socially aware simply because of my differences.

2. I feel that when going out with friends, they have to put up with extra inconveniences such as things taking longer due to my care needs, or choice of venues being limited due to poor access.

Paranoid Thinking?

I often wonder if my friends enjoy the experiences less, simply because I am there. Are their assurances that they are unbothered by these changes to their normal night out genuine? Is it better to be lonely than experience friendship induced paranoia?

To summarise, I am aware that one way to reduce my paranoia and feelings of loneliness is to try to remember that I am an awesome, valuable person who has just as much right to a rich and beautiful life as anyone else.

Indeed, friendships are a key element to humans not just surviving but thriving. I also could get out and socialize more and stop assuming that everyone has negative and apprehensive feelings towards me and my disability. It could, in fact, enhance our relationships.

If people were more open and outwardly accepting of others with differences, it would allow me to feel more loved and valued in the body I have, just as I am. So let’s work together!

Follow Our Loneliness Campaign

This article by Charlotte Faragher is part of Enhance The UK’s disability and loneliness camaign. For tips on overcoming loneliness and for more insightful articles search the hashtag #DisabilityAndLoneliness and follow our campaign. We’re @ETUKUndressing on twitter and on Instagram @UndressingDisability.

More from Charlotte

If you enjoyed this article by Charlotte you can read more from her in this article about romantic relationships. You can also connect with her on Facebook and Twitter.

A graphic of a man showering with a thought bubble that say SEX, behind him are two carers

Disability, Sexual Expression and the Privilege of Privacy

By Disability, Undressing Disability

Let’s take a look at the realities many disabled people face around sexual expression and intimate relationships.

This article is written by Zoe Lloyd, a counsellor and disabled woman who has live-in PA’s. It is intended to provide insight for:

  • care home workers
  • carers and personal assistants
  • occupational therapists and physiotherapists
  • those working and supporting disabled people to enjoy every aspect of a fulfilling adult life.

Question

To give an insight, let’s start with a few questions to help set the scene.

  •  What do you do to prepare for a date or a naughty weekend away?
  •  Do you need help with intimate personal grooming such as hair removal or applying body lotion to make you feel and look your best?
  • Who do you tell when you’re planning to have sex?
  • Who helps you to open the packaging on your new sexy lingerie or sex toy?

Privacy

We’re guessing many of you get ready for a hot date in private and don’t have to tell anyone else what you’re up to. Some of us will not have that freedom of privacy and will rely on a carer/PA to help us get ready for some intimate fun.
This could be requiring help to shave ‘down there’ or packing sexy underwear and sex toys into a case…. someone knows what your plans are!
Many disabled people live their lives in this way, without the privilege of privacy.

a graphic of a male showering with two carers in the background and thought bubble that reads SEX coming from his head

Embarrassment and Anxiety

All of these scenarios where someone is left feeling quite exposed by their lack of privacy, can lead to a constant underlying hum of embarrassment and anxiety.

No matter how much you may laugh it off or pretend you’re confident, having no privacy affects you.

Other people don’t need to have someone involved in these processes unless they choose to share. That’s the key – our lack of choice. If we need to pack a case for a sexy weekend, and can’t physically do it ourselves, then someone else will always know what you’re taking and what you’re planning. Therefore, we either deal with that, or we would have to deny the sexual part of ourselves forever. All just to save some embarrassment. Disabled sexuality should not be a taboo topic, whether that be in residential care homes, in PA/client relationships, or wider society.

Disclosure to a PA/Carer

Another point to consider is which carer/PA would you feel comfortable involving in this intimate side of your life? Disabled people can have several carers all of whom come with their own personal set of beliefs and embarrassment levels which can cause more barriers.

Imagine planning your sex life around the days a specific carer –the most approachable one– is working? This is a perfect example of the lack of spontaneity many disabled people face. It’s great when you’ve created a relationship with your carer where you feel happy to disclose these details. However many people don’t get that luxury.

Plus there’s having the confidence in yourself to ‘own’ your sexuality and not be concerned about someone else knowing your private life. Finding this secure place within yourself can be a lengthy process. Yes, you’ll see Instagram influencers who appear very comfortable with their sexuality, naturally that’s why they’re in the public eye! They provide a voice for those without the confidence. Unfortunately many people feel trapped,  still too ashamed to share their sexual desires with their carer. Resulting in their carer not knowing how to help facilitate access to their wishes.

Starting the Conversation

How can carers and care giving professionals improve this situation?

  1. Tell your client know you are open to having this kind of conversation. Take the awkwardness away before it gets to that point. For example you could say, ‘I’m here to support you in whatever way I can. I’m happy to talk or help you with anything – even if it’s sex stuff! I know it can be embarrassing, so I’m letting you know you don’t have to feel embarrassed with me’.
  2. If it feels appropriate, share a story of your own, so they don’t feel there’s such an imbalance of having privacy exposed.
  3. Depending on your work environment, have literature or symbols (say Pride colours for example) visible. This way the client knows that the PA/Carer or organisation is a safe setting of acceptance. These items can be used as a prompt for a conversation starter.
  4. Judging each situation differently. You may be able to suggest, in a light-hearted manner, ‘oh are you going to take some sexy underwear?’, or ‘bet you’re going to get all spruced up – want me to help?’ This breaks the barrier for them and the client can then say yes or no more easily.

 

Sexual Expression Training

Enhance The UK runs two fantastic training courses on sexual expression, the first of their kind in the UK. The courses are designed to support residential care home workers and those working in the field to better understand disability sexuality and an individual’s right to sexual expression. Learn more via the links below or get in touch to enquire about available dates.

Disability and Sexual Expression Training

Sexuality, Sexual Expression and Relationships Training for Care Providers

 

 

The words 'Breaking News' written in a tv news format against a yellow background

News: Enhance The UK launch Ground Breaking Disability And Sexual Expression Training

By Disability, Undressing Disability

In what is believed to be a first for the UK, disability awareness charity Enhance The UK has developed a new training programme on the topic of Disability and Sexual Expression.

Aimed at professionals working in caregiving roles such as occupational therapists, care home staff and physiotherapists the course tackles the subject of disability and sexual expression.

Jennie Williams, CEO of Enhance The UK (ETUK) said “Our training programme is for occupational therapists, physios, sex educators, teachers and anyone who works with disabled people. It is designed to build confidence and develop communication skills so that the current barriers around sex and disability can be removed and open conversations about sexual expression can take place with a person in their care.”

Jennie wears a patterned swirly dress, has long blonde hair and dark framed glasses with pink lipstick
ETUK highlight that the training is necessary because sex and disability is still a taboo subject, and even in a medical environment there are barriers due to a professional’s personal level of embarrassment or awkwardness around the topic.

The following scenario puts this in context. A man in his 30s has been in a traffic accident and has acquired a spinal cord injury. His life has changed dramatically and whilst he’s receiving support for his physical and mental health, he’s unsure who to ask about his sex life. A lack of intimacy is causing issues in his marriage and impacting his self esteem.

CEO Jennie Williams explains “Everyone has a right to sexual expression and it’s wrong to assume that disabled people aren’t sexual beings with the same need for intimacy, exploration and expression. Yet in a professional capacity it can be a tricky subject to approach when your employer has no policy in place, or you feel uncomfortable or embarrassed chatting about sexual wellbeing with a patient. Our training course will build confidence and develop communication skills thus enabling open conversations which support the needs of both patients and caregivers. ”

Jennie adds “We have delivered this unique training course to an NHS Trust and to care home staff and the feedback is extremely positive. It’s obvious there is a need for this course for professionals. Our goal as a charity is to change the way society views disability and to raise standards in sexual health and sexual awareness for disabled people. We are delighted to be able to support both professionals and the disabled community with our work.”

Learn more about our Disability and Sexual Expression training by contacting us directly. You can also watch this video and learn the details of the 3.5hours course.

 

A brown haired woman presses her hands over her eyes exhausted with her glasses resting on her head. Her shoulders are visible and she wears a multicoloured top

Sex, Chronic Pain and Fatigue

By Disability, The Love Lounge

The Question

Dear Love Lounge,

I want to ask about sex, chronic pain and fatigue. I really want sex with my partner, but I might need antibiotics and a few days in bed to recover. I get so frustrated that I have to wonder if the price of doing it is worth it? I feel like I should always be able to offer sex, but I know that it will cause me pain for days. I worry about how this impacts my relationship with the man I love. I’m writing in to ask for any tips you may have!

Thanks,
Belle

 

Our Answer

Hi Belle,

Thanks for writing to us, we get a lot of questions about sex, chronic pain and fatigue.

You’ll have discovered that advice is often targeted towards erectile dysfunction, inability to reach orgasm, or fertility problems which won’t answer your question. On our Undressing Disability Hub, we have a more detailed resource on sex, chronic pain and fatigue (it’s free) for anyone who might want more insight. Here I’m going to focus on what you’ve asked for… some practical tips.

A brown haired woman presses her hands over her eyes exhausted with her glasses resting on her head. Her shoulders are visible and she wears a multicoloured top

Honesty

Find a way to effectively communicate with your partner, letting them know how much energy you have in the tank right now. What you are capable of doing, and whether you’re willing to go ahead and have a great time even if it means you pay for it the day after.  Don’t be too proud, you don’t have to power through all the time.  Revealing your vulnerabilities can often be very bonding for you and your partner.

Positions

If your body has changed because of a chronic condition or disability, then using toys or props might help. It may be easier for you to strategically position pillows for support or comfort. Try new positions that take pressure off certain joints or require less flexibility. Don’t feel you have to over perform to impress if it causes you pain. When you’re not relaxed and enjoying it, your partner will sense your pain and therefore not benefit from your gymnastics anyway!

If dexterity and pain is an issue, using toys on yourself or your partner may take the strain from you doing so much. Let the toy do some of the work! (This article on sex toys for those with dexterity issues may help.)

Preparation

Taking painkillers 30—60 minutes before you’re going to get down to it, may relieve some stiffness and pain.  The next day, take painkillers to manage the potential flare up after your activity.  Keep on top of it so your mind doesn’t always associate sex with pain.  This may help keep you relaxed for the future too. Pain might be inevitable but if you pre-empt it, or fear it, the tension will only make it worse.

Warm/hot showers

Shower solo or together to soothe the body’s aches and pains. Massage can relax those muscles, ease joint pain, enliven nerve endings and be bonding for both of you.  Even if you don’t take it any further.

a shower with water coming out - Sex, Chronic Pain and Fatigue

Timings

When are you most fatigued and most in pain? Try and plan your sexy time to optimise your experience, based on when is best for you.

Reassurance

Either from a clinician or yourself to your partner that they won’t make you worse (let’s say a heart condition where they fear sexual activity might be too much for you).

Don’t just focus on intercourse!

Find other ways to be intimate. Dance together, shower or bath together. Cuddle up, stroke each other or massage. Take time out for romance – candles, putting down your phones and actually looking at each other, sharing feelings and talking. This can all build intimacy and connection, without you paying the price for a having a bit of nookie and enduring pain for a few days.  If penetration is likely to cause horrid UTI’s, then these options are great for avoiding that, when you just can’t tolerate another course of antibiotics!

I hope that helps. Access the free resource on Sex, Chronic Pain and Fatigue via our Undressing Disability Hub. It’s free to join and free to download a wide range of valuable resources.

All the best,

Zoe x

Stay Connected

Join the online conversation by following us on twitter @ETUKUndressing and on Instagram @UndressingDisability 

 

 

Next question
CBD oil a plant and dropper

A Beginner’s Guide to CBD

By Disability, Undressing Disability

Could CBD help when it comes to disability, pain or mental health issues?

It seems like CBD is everywhere and in everything at the moment. But what is it, and what does it actually do? We’ve prepared your ultimate guide to all things CBD.

WHAT IS CBD?

CBD stands for cannabidiol. CBD is an active compound found in the cannabis plant. It can be extracted from the plant and made into oils, topicals, vape e-liquids or added to food or drink. It is non-intoxicating and it is thought to have potential health and wellness benefits.

HOW DOES IT WORK?

The endocannabinoid system is a biological system in our body. It impacts several major processes which include appetite, sleep, mood, and memory. It is thought that CBD interacts with the endocannabinoid system and binds to CB1 and CB2 receptors. CB1 receptors are found in the brain and body. CB2 are located mainly in the immune and gastrointestinal systems.

A jar of CBD oil with a plant leaf sitting on a wooden worktop

HOW COULD CBD HELP ME?

Inflammation

Inflammation is caused by your body’s white blood cells responding to infection, leading to redness, pain, and swelling. CBD could potentially function as an anti-inflammatory which would help to reduce swelling and inflammation. One of the ways that CBD is thought to reduce inflammation is by inhibiting an eicosanoid enzyme called COX2. One study in 2013 which explored the anti-inflammatory properties of CBD found that cannabinoid may protect against the harmful effects of inflammation in a mouse model of Multiple Sclerosis.

(Link to study : https://www.sciencedirect.com/science/article/pii/S0969996113001939)
(Link to Mind statistic: https://www.mind.org.uk/information-support/types-of-mental-health-problems/statistics-and-facts-about-mental-health/how-common-are-mental-health-problems/#:~:text=1%20in%204%20people%20will,week%20in%20England%20%5B2%5D. )

Anxiety

Anxiety - a dark haired beared man holds his fingers to his temple and closes his eyes with scribbles to represent noise coming from his head

Struggling with your physical or mental health can lead to added anxiety. Mind.org estimated that 1 in 5 people have a mental health problem such as anxiety or depression. CBD may help to reduce anxiety. In a study, positive interaction between CBD and a crucial neuro-receptor linked to anxiety was noted. An evidence review published in the British Journal of Pharmacology found that full-spectrum CBD could have therapeutic benefits for both anxiety and pain.

(Link to study: https://bpspubs.onlinelibrary.wiley.com/doi/epdf/10.1111/j.1476-5381.2011.01238.x/)

Sleep

It can be difficult to get to sleep if you are suffering from physical discomfort or your mental health is causing you distress. A case study from 2019 revealed that CBD could potentially help while tackling anxiety.
It involved 72 participants with 47 of those experiencing anxiety and 25 suffering from poor sleep. They were given 25mg of CBD daily then recorded their feelings. The researchers noted that 79.2% recorded their anxiety felt lower and 66.7% said their sleep had improved after just the first month.

(Link to study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6326553/)

WHAT’S THE DIFFERENCE BETWEEN MEDICAL CANNIBAS AND CBD?

CBD stands for cannabidiol and THC is tetrahydrocannabinol. Both could offer therapeutic benefits for a number of different conditions. In the UK, CBD is available over the counter legally but THC is not. You need a prescription for medical cannabis in the UK from a licensed clinic.

CBD could potentially help with nausea, migraines, sleep, anxiety, inflammation (skin conditions, arthritis), pain, epilepsy and seizures. THC is often associated with the treatment of glaucoma, insomnia, nausea caused by cancer treatments, appetite problems, pain and muscle spasticity, anxiety and multiple sclerosis.

Speaking to your doctor and doing research when it comes to starting CBD is important.

HOW DO I TAKE CBD?

There are a lot of different ways to take CBD. You may find that you prefer some more to others or some methods may suit different needs. It’s best to try different products and keep a journal so you can chart the benefits or differences you feel.

Here is a brief guide to the four most common ways to take CBD

Oils or Tinctures:

Tinctures or oils are an easier way to take CBD by simply popping a small amount under the tongue and allowing them to absorb before swallowing.
The molecules are absorbed through the lining of the wall of the mouth, which is particularly sensitive, and beneath the tongue. It is worth noting that there is alcohol in a tincture if you are trying to avoid it.

Edibles:

Edibles are foods and drinks that have been infused with CBD. Edibles range from gummy bears to brownies to bars of chocolate and bottles of water.
CBD is extracted from a plant using a solvent before forming a concentrated substance. This is then added to the food or drink. The big difference with edibles is that they take longer to work and some of the CBD is ultimately lost due to the metabolic process. This varies from person-to-person with variables such as height or weight.

Vape:

Vaping is a fast way to absorb cannabinoids into your bloodstream.
E-liquid vaporises at approximately 200°C, producing a vapour which is then inhaled. The CBD then enters the bloodstream through the lining of the mouth, throat and lungs, allowing for rapid uptake. Legal CBD e-liquids come in a variety of flavours but will not get you high as they do not contain Tetrahydrocannabinol (THC). THC is a Class B controlled drug in the UK and is illegal.

Topicals:

Topicals are great for relief from aching muscles and for treating skin conditions. The healing compounds are absorbed directly through the skin, allowing them to target a specific sore area for faster and more focused relief. Apply a balm, lotion or oil to the affected area of the skin after a hot shower and allow it to sink in.
Read more: https://cannavistmag.com/cbd101/ways-to-take-cbd/

WANT TO LEARN MORE?

The Cannavist Magazine is your essential guide to all things CBD and medical cannabis. It is available in-store at WHSmith, McColls and Easons. It can be found online at cannavistmag.com and Readly.com

Keep up to date with all of our latest podcasts, news and insights by connecting with @ETUKUndressing on twitter or follow @UndressingDisability on Instagram.

Sign up for free to our Undressing Disability Hub to access free resources on a host of topics relating to sex and disability.

A graphic of a dark haired man and woman in bed together sleeping

Virginity, Sex, Disability and Safety.

By Disability, The Love Lounge

The Question

Hello,

I tripped upon your organization while looking up sex and cerebral palsy on YouTube. I’m writing to you about losing my virginity, sex, disability and safety.

I am 51 years old, spastic quadriplegic born with cerebral palsy and use a power wheelchair for mobility. I’ve had a couple crushes when I was a teenager and in college but that was it. My parents never talked to me about sex other than the most basic education of how one becomes pregnant and the high school sex Ed.

I would like to experience sex before I die, but I also don’t believe in sex unless I am in a long-term relationship. I have been struggling for many years with several health challenges that have made my cerebral palsy worse and left me with unmanaged chronic pain. Due to my multiple health challenges and many family issues I do not have the ability or interest to go out to bars. I am also scared about my safety in dating a man. For example what do I do if I want to have a little privacy to be intimate but due to disability you can’t get away if it becomes more than you want and the other person doesn’t respect that. What do you do?

I’m really embarrassed to email you this but thankful that there is this platform. I feel like a freak!

G x

 

Our Answer

Hi G,

It took great courage for you to write into us and I’m so glad you reached out. I can feel your predicament here in being caught up in a bit of a moral dilemma. Also, you have some big practical issues which are making it more difficult for you.

It would be useful to know more about your family issues which you say are urgent and making it less likely for you to go out. Understanding this, I may be able to see how you could overcome this. Also, if you have any carer that works with you. As they may be able to facilitate you getting out socially and also make you feel safer if meeting someone.

Hearing your concerns, it seems to me that it comes down to a choice of what is your biggest priority now. Is it about losing your virginity? Or is it doing the act within a long-term relationship or marriage?

Currently, with the situation as you describe, it sounds like it will be difficult for you to be getting out and meeting someone. This can take a lot of  effort at the best of times, so with your family difficulties, meeting the right person could take even longer.  Are you willing to wait quite a while longer to lose your virginity within a loving relationship?

If you don’t want to wait, there’s the option of seeking out a sexual encounter, perhaps not in a relationship. This is where it would completely depend on how you feel going against your current beliefs about the parameters within which a sexual relationship should be conducted.  And if you feel you would be comfortable undertaking such an experience.

a graphic of a mobile phone with a person and lovehearts in white and the background is pink

In the UK a charity called TLC have sex workers who work with disabled clients. Exactly for the reasons you say. They guarantee safety and can offer a ‘boyfriend/girlfriend experience’ too. Here is the link to their website. https://tlc-trust.org.uk/

It may be that you could take it slow and steady rather than going full steam ahead on the first time.  There is a cost to this service and it’s quite expensive but the workers are trustworthy and experienced in working with disabled clients.

If this isn’t a consideration for you, maybe try internet dating to try and engage with someone, building a rapport before taking it further. Again, if you have a friend or a carer you can trust, they could go out with you the first time you meet your date. You mention your fear around someone wanting to go further than you want, and how do you stay safe. You’re right, we are more vulnerable as disabled daters and have to think of more options to keep safe.  I would suggest a friend or carer being in the same location as you, but not sitting near you to allow you some privacy and normality for you and your date. If you needed help,  your friend can keep an eye on things and it would be easy to catch their attention. They can then ‘rescue’ you from any awkward situation.

With internet dating there’s another dilemma we all face. Do we declare our disability openly and attract those who are open to dating someone disabled? Or don’t declare it, attract more people, get talking to some people first, then drop the disabled bomb?!

The world of dating and disability can be a minefield. But it can also be fun. Losing your virginity is an important human right and feeling stopped from doing so is deeply frustrating.  Ultimately, it’s your choice with how you wish to go about it.  I just hope your current living situation allows you to make a free choice. It is your body and your life after all. Do what feels right for you.

Best regards,

Zoe

Keep up to date with all Love Lounge chat and our campaigns by connecting with us on twitter @ETUKUndressing or on Instagram @UndressingDisability  

If you’d like to get our experts advice with your own dilemma feel free to get in touch. 

 

Next question
Stress Impacts Your Libido - a face covered with hands and another two hands pressing down on the side of the head

How Stress Impacts Your Libido and General Health

By Disability, Undressing Disability

This article is about how stress impacts your libido and general health.

What is stress?

When we’re feeling stressed, our body has a physical reaction which triggers the release of cortisol and adrenalin. These stress hormones send us into what is known as ‘fight or flight’ mode. Instead of being relaxed we are on edge, worried or overwhelmed. Everyone has different things that trigger stress but for the majority of people stress impacts your libido, your mental health, and your physical wellbeing.

Physical Symptoms of Stress

Stress is exhausting and lowers our tolerance for many things. Some symptoms of stress are:
• Sweaty palms
• Foggy mind and/or irrational thinking
• Irritability and/or low mood
• Rapid heartbeat
• Shallow breathing
• Insomnia

When stressed, we just don’t have the capacity to be thinking about others, only focussing on ourselves. A lack of tolerance for others, irrational thinking and even aggression can impact our relationships by pushing your partner away. In turn, the lack of closeness can lead to more worry about your relationship and perhaps lead to low self-esteem.

Stress and Libido

Stress can affect both men’s and women’s libido. The stress hormone cortisol disrupts your testosterone levels, which is responsible for men and women’s sex drives. It can also:

• Narrow your arteries, meaning men may experience erectile dysfunction
• Take you longer to become aroused and reach orgasm

When you’re stressed and have worries and thoughts running through your head it’s not surprising that your libido might decrease.
If stress is impacting your libido, trust that this can change. It doesn’t mean your sex drive will be low forever. It can fluctuate at any time and for many reasons. Intimacy may help reduce your stress too. So kisses, a loving cuddle or massage can alleviate your tension and stress. And with time, this may help your libido increase.
Masturbation can be a big stress reliever too, so it’s not just a partner that can make you feel good!

What can we do to manage stress?

When you feel stressed and are aware of the physiological changes, try and take control back by refocusing your thoughts. Ask yourself:

1. What is really going on in this moment?
2. How can I reasonably respond to the situation?

This isn’t easy and will take much practice to regain control of your thoughts.

Here are some tips:
• Slow down your breathing and breathe through your nose, deep into your belly, expanding your diaphragm. Release the breath slowly and forcefully, emptying the lungs.
• You can use mindfulness with your breathing too. Notice the air flowing through your nostrils and how your chest and belly rises. How does it feel? This exercise of thought focus will divert the panic response of fight or flight.

Managing relationships whilst stressed

If you recognise that you’re being snappy and impatient with your loved ones, don’t be too proud to admit it’s happening.
When you’ve got time to collect your thoughts, be honest with them. Say

‘I’m stressed at the moment and know I’m being irritable. Bear with me’.

This will help dissipate their bad feelings towards you, rather than you not admitting it, feeling guilty yet still displaying the unhelpful behaviours! Also just being open and chatting the problem over with them may help you. The old adage ‘a problem shared is a problem halved’ is so true.
• Always remember – talk, reach out, use techniques, seek support! It’s out there.
• Speak to your doctor if stress is impacting your day to day life.

Useful Resources

The Stress Management Society – 30 Day Challenge

Mental Health Foundation – How to Manage Stress

NHS – 10 Stress Busters

 

Keep up to date with all our Undressing Disability chat by joining us on twitter @ETUKUndressing or on Instagram @UndressingDisability.

A woman with a disabled partner - she has brown curly hair leans down and puts her arms around a blonde man in a black top, they look lovingly at each other and smile

Family Reaction To My Relationship with a Disabled Guy

By Disability, The Love Lounge

The Question

Dear Love Lounge,

I need your advice on my family’s reaction to my relationship with a disabled guy. My parents have met my partner numerous times over the past year, and we all get along well. Last month we moved in together and plan to get married. My Dad has suddenly gone a bit weird about it all, asking questions like “Who will put up shelves for you, and who will cut the grass? I’ve pointed out that its not 1950 and that I can put up shelves and cut the grass but he’s still going on about it.

My partner knows there’s something upsetting me but I haven’t told him about my Dad’s comments yet. I’m not quite sure how to handle that conversation as he loves my folks. It’s really upsetting that my Dad is being off when it should be a happy time for us. Help please!

Ellen x

Our Answer

Hi Ellen,

Thanks for opening up about this scenario. I think it is more common than you may think, although that doesn’t make it feel any easier for you!
Being in a relationship with a disabled partner can indeed bring practical problems. But there are invariably solutions to most of them. Your parents naturally want their daughter to be looked after well but your Dad is focussing on what your partner can’t do!

The generations before us had their jobs clearly divided into ‘blue and pink’ jobs. Many of us now subscribe to that notion less and less. Perhaps your Dad’s perception is that to be the ‘man of the house’ you have to put up shelves and mow the lawn. This is how he felt he supported the family and looked after his girls. Doing these blue jobs validated him as a husband and father.

I wonder if it might be worth a chat with him about this way of thinking – as this isn’t necessarily dependent on your partners disability. You could have a non-disabled partner who is useless at putting up shelves!

I would also consider mentioning this to your Dad – what would happen if you married a non-disabled person and then they became a wheelchair user? You would naturally have to adapt to a new way of life as he may no longer be able to do these tasks. I doubt your Dad would encourage you to leave them because they can no longer mow a lawn.

It sounds like your Dad is a little fearful of the future and has gone into fatherly protective mode.
A simple, adult to adult chat to reassure him may be all he needs.

I think not getting angry or defensive will help you. It appears this is really coming from a place of concern from your Dad rather than a place of mean prejudice. A gentle talk, with confidence and assertion from yourself about how you will manage the household and the relationship as a whole, will allay his fears. It’s encouraging that he gets on well with your partner and has known him for a year. Your Dad will have seen the lovely attributes of your boyfriend; those you’ve fallen in love with. Hence why being in a relationship with a disabled partner doesn’t bother you, as it is about much more than practicalities of a disability.

It’s great that your partner really likes your parents, and I can understand why you may not want to disclose your Dad’s comments.  It could hurt your partner and emasculate him perhaps.  Or conversely, he may totally empathise with your Dad and be willing to talk to him to reassure him.  He may express how he contributes to the partnership and what that looks like to him.  His dedication, emotional support, commitment, love – all more important than him making Wimbledon-quality lawns!

And hey, if it’s such an issue, or your partner fancies mowing – he could always get hoisted up on to a ride-on one 😉

Good luck with the chats.  I have every confidence this can be easily sorted with a bit of empathy and compassion from both sides!

Zoe x

Stay Connected

Got a question for our Love Lounge team? Please contact us and we’ll do our best to help. Follow us on twitter and Instagram to keep up to date with all our goings on. Join our Undressing Disability Hub to learn more about sex and disability and to access free resources. #UndressingDisability #LoveLoungeUK

 

Next question
A starry sky

My Vagina is The Star – Kiruna’s First Smear Test

By Disability, Undressing Disability

A guest blog by Kiruna Stamell.

I am a dwarf woman, a little person, person of restricted growth, person of short stature. That is my ‘thing’. Or the ‘thing’ people focus on.

As a result, I had this long-held belief that I had received my ‘lot’ in life. You know, I had my ‘thing’. I been served my life’s challenge. Somehow this made me arrogantly believe I was superior to getting cancer, herpes, murdered by a serial killer or being struck by lightning. I was simply too unique to be touched by common problems.

I am not alone as a disabled person in this thinking. It seems to be a common idea amongst us disabled folk and reinforced by non-disabled people that we already ‘carry our burden’. We are externally defined by our impairments so often, we too subconsciously internalise the belief, that our impairments are our [winces] ‘thing’.

So, a vaginal or cervical cancer thing was not on the list of things to worry about.

The ‘woman’ part of my identity felt flimsy, secondary to the desexualised label of ‘dwarf’, but she’s always been there. And one day, I woke up to the reality that my health isn’t just about my impairment.

I don’t know what happened, but I think it was a desire to feel like every other woman. All my average height and non-disabled friends were having their vaginas looked at and I wanted someone to look at mine.

Also, I had had a period refuse to stop and thought this was weird. So did my doctor.

My First Smear Test

The first challenge was that I was a virgin, and the doctors were funny about putting a speculum inside a virgin. I think, this is why I got sent to a proper gynaecologist straight away.

I was not so precious. I liked that my vagina was getting a lot of attention and being taken seriously. It took the medical focus off my height. All eyes were on my foof, and my foof was equalising!

At my first smear, lubricant was liberally applied. This was really helpful.

There were a couple of challenges:

  • The building was an old hospital, so door handles were too high for me to open, so I had to be escorted through the building.
  • Getting onto the bed was a challenge. Doing it gracefully and with no knickers on more so, as for me it was a literal climb. They made a step up onto it out of a chair and a smaller step stool.

I discovered that my cervix sits very high up and to the front. I’ve remembered this detail for all subsequent smears, telling the nurse saves so much time!

I find the weirdest bit is when the speculum parts. It feels a bit like when the dentist pulls your cheeks apart. Sometimes, my vagina creaks. Not audibly but like a sound you feel in your body. On a good cervical smear day, it just opens up and if to say ‘wow’. These occasions are rarer, and I only really remember that happening with the lube.

I find it reassuring getting a smear. I find it a really good reminder that being a ‘dwarf’ isn’t my only ‘thing’. I feel connected to humanity knowing I need to look after my sexual health as much as anyone else does.

When I am on that bed getting a smear, my vagina is the star. In that moment it is the most unique thing about me.

Cervical Screening Campaign

Learn more about our Cervical Cancer Red Tape campaign. which aims to remove the barriers that many disabled women face when accessing cervical screening and sexual health services. Search hashtag #CervicalScreeningRedTape to join the conversation and follow us on Instagram and Twitter.

We hope our tips for improving access to cervical screening make a difference. If you work in the healthcare sector please feel free to share them with your network.

 

Top