Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

Emotional Mastery In Chronic Illness… Lessons From Disney’s Frozen

What if the thing you really want is hiding right where you are afraid to look?

 

This week my daughter turns 12.  I am not quite ready to accept that she is ALMOST a teenager – my sweet little girl is turning into a bright and sassy young lady.

For a birthday treat we took her and a friend into London to see the West end production of Disney’s Frozen.

My kids grew up with this movie, the songs embedded in me like a familiar, comforting tune playing in the background – and rather than the movie more recently the Just Dance version has become a firm favourite.  It takes me right back to her prancing around the front room all dressed up and singing at the top of her voice in her princess outfits : innocent, carefree.

We’ve all seen the film we all know the plot but have you ever thought about it… really.

I’m going to give you my take on what Disney’s Frozen taught me about mastering emotions and coping with life’s challenges.  You may be surprised to discover that that the key to unlocking the thing that you deeply desire may actually lie in that last place you want to look.

 

Frozen-Samantha-Barks-(Elsa)-Photo-by-Johan-Persson-

 

Conceal, don’t feel

 

It begins when Elsa accidently hits Anna with her winter powers, Anna’s memory is wiped of the incident and from this moment Elsa hides herself and her powers from her sister.  Early on Elsa’s is given a pair of gloves, as she puts them on her father tells them they will help.  There is a pivotal line at the beginning of the performance that forms the backbone of the show from here on in.

 

Father: “conceal it.”

Elsa: “Don’t feel it.”

Both: “Don’t let it show.”

 

How often do we follow this advice in our own lives?

Feeling sad? Conceal, don’t feel.

In pain? Conceal, don’t feel.

Feeling fatigue? Conceal, don’t feel.

Stressed out and overwhelmed? Conceal, don’t feel.

Struggling to get your head around a diagnosis? Conceal, don’t feel.

 

Whenever we experience what society would deem to be ‘negative’ emotions we are conditioned to pop them in a box and get on with things, to put on a brave face, to not show our perceived weaknesses to the outside world.

“Conceal, don’t feel, put on a show, make one wrong move and everyone will know.”

We have been taught to think of emotions as good or bad.  But feelings are just feelings and all emotions are part of being human. Negative emotions aren’t harder to feel, it’s resisting them that’s hard.  We develop habits NOT to feel what we perceive to be the bad or negative emotions creating resistance, ironically taking the energy from these emotions with us until a situation triggers it again and it keeps piling up inside.

 

Fear

 

Elsa was tormented by fear, scared to hurt her sister and of not being able to control her powers, the fear had gripped and controlled every part of her life and had built up like a tornado inside her over the years of pushing it away.

Anna knew this was driven by fear but she just didn’t know why.

“Why do you shut me out? Why do you shut the world out? What are you so afraid of?”

Fear wasn’t working for Elsa, but she did not know another way to be.  Like most of us we are just doing the best we can with the resources that we have at the time.  When we know better…. we do better.

 

Hurt

 

Coronation Day proves too much for Elsa after showing her powers she flees to the mountains. 

She is hurting right now.

What do we do when we are hurting? We hide away, we shut ourselves off, we avoid, we feel sorry for ourselves, we feel angry we wallow in self pity for a bit.  Sometimes we come out of it, sometimes we don’t.

But, it all comes back to the underlying fear that she feels.  She is afraid of what people may think of her, that they will reject her and of what she may do.  It is easier for her to hide away than to face up to what she is scared of.

Familiar?!

Here in the mountains is where we have the famous song “Let it go” I’m sure most of you know the words by heart. 

It may seem that on one level Elsa has finally embraced and accepted who she is.  But while running away has made her fears and problems seem smaller the internal storm is still raging inside her.

Avoiding our feelings just postpones things, it’s what we do when we are not ready to face up to the hard stuff.

 

“Let it go , let it go, can’t hold it back anymore

Let it go, let it go, turn away and close the door

I don’t care what they’re going to say

Let the storm rage on

The cold never bothered me anyway”

“It’s funny how some distance, makes everything seem small

And the fears that once controlled me, can’t get to me at all”

 

Ultimately all that Elsa is doing is running away from her problems instead of dealing with them.

Anna comes to the ice castle in the mountains to find her sister, Elsa thought that she had solved everything on her own by running away and is shocked to know that Arendell has been thrown into an eternal winter but she just can’t bring herself to help, accidently striking Anna again but this time in the heart.  Elsa conjures up a snow monster to send everyone away from the palace before she can hurt anyone else.

Pushing everyone away because she does not know what to do.  

Eventually captured Elsa is told by Hans that Anna has died because of her.  She uses her powers to break free and makes her way to the frozen river, to Anna.

Elsa is overcome with grief and remorse and finds that in the midst of these emotions the blizzard actually stops.  In that moment Elsa realises that she can control her powers.

 

“There is no fear in love, but perfect love casts out fear.” 1 John 4:18

 

A real love for others will chase those worries away. The thought of being punished is what makes us afraid. It shows we have not really learned to love. Perfect love was the antidote to fear.

All emotions are part of being human, not good or bad and our emotional freedom lies in accepting, allowing and releasing our feelings not stuffing them down or drowning in them.

Once again Disney, in my opinion hit the mark with this one.

 

Lessons in my own life

When I was first diagnosed with Charcot Marie Tooth disease and subsequently Ehlers-Danlos Syndrome I fought so hard to be strong.  I was scared and my strength became my protection.

It felt like I was fighting every day.  I did not let my guard down because I was scared that if I did it would be a weakness and someone may see or I would not be able to cope.  I thought that fighting was the only way.  That I had to have control over everything that I possibly could as everything felt like it was out of my control.

On the outside it seemed like I had everything sorted : the perfect family, life, children, car. I did have all these things… my family especially are bloody amazing but these external things were not what I needed.

While to the outside world our life was perfect (and in many ways it was), underneath it all felt like I was struggling to stay afloat. Because ultimately fighting is tiring, hiding is lonely, being strong and pretending to have it together all the time is not real.  

I had built my Ice castle around me and it was beautiful and strong and I did not let any of those messy feelings out for fear the walls of my castle may crack and it may all come tumbling down.  

BUT

The strength that I so desperately was striving for was not found in the depths of the fight or inside the walls of my heavily fortified castle.  

The strength I needed could only be found when I was ready to trust and embrace peace, the very place that I was scared to go.

My strength today, is not found through putting my gloves on and getting into the ring every day ready for battle. It is found in the quiet knowing that I can handle anything that life throws at me. That I have it covered. Peace has opened the aperture to see the bigger picture and the possibilities available to me to face all of life’s setbacks.

Fighting only narrowed that lens.

It’s often the last place that we are willing to look, and the hardest one to go to, that holds the key to everything that we desire.

 

If you want to find true connection and love you will only find it once you’ve embraced you’re fear of loneliness.

If you want freedom you will find it once you have embrace feeling stuck.

If you want to feel worthiness, embrace the part of you that feels unworthy.

To experience authentic confidence you have to embrace self-doubt.

To feel secure you must know insecurity.

Just imagine that you have been hurt in a past relationship, you are so scared of getting hurt again so you are guarded when dating, never really opening up, just in case you get hurt again.  What you really desire is love but until you are willing to be vulnerable love will never really be open to you. You have to embrace your vulnerability to find what you ultimately desire, true love.

 

What if the thing you really want is hiding right where you are afraid to look?

 

So queen, my question to you, what are you willing to embrace in order to get what you desire? Are you brave enough to go there and set yourself free?

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Join Our Tribe

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You may feel like no-one understands what it’s like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may just feel a little uncertain. In The Tribe we get that.

You value life and want to be the best version of you. To manage your symptoms effectively so that you can live your best life.

In the community we will be having real, open conversations about how you can do this. With my experience of living with multiple chronic illness’ and raising kids with CMT, EDS, PoTS and ME. I know that the struggle is real. I will be sharing guidance, challenges, my personal tips and real life stories to remind you of how this can become a reality now!

95 Things NOT To Say To Someone With EDS

95 Things NOT To Say To Someone With EDS

I bet if you have a chronic illness, especially one as misunderstood as Ehlers Danlos syndrome (EDS), someone somewhere has given you a piece of well meaning advice that hasn’t quite landed.

As you will see, even from well trusted medical professionals.

Unless you know someone with Ehlers-Danlos syndrome (EDS) or Hypermobility Spectrum Disorder (HSD) or have one of these conditions yourself you have probably never heard of them. Although the most common type of EDS, hypermobile type is not a rare condition, many medical professionals have very limited knowledge from their training, particularly about the multisystemic nature of the condition.  Other professionals, perhaps in the education system or the local health services may never have come across EDS/HSD before at all.

So as patients and parents of patients we have come up against so pretty funny opinions from professional about EDS. I don’t think in most cases that these comments that people have are supposed to hurt or do harm, sometimes people simply do not think before they speak. Often, people want to help, are trying desperately to help but due to lack of understanding they don’t quite get it right! And sometimes they clearly don’t get it at all and should probably keep their thoughts to themselves and seek some proper advice or education from someone who does.

A little while ago I was having a challenging EDS mum day I needed to know that I wasn’t alone in all of this so I asked some EDS friends and parents a question “What is the one thing that someone has said to you that has been so ridiculously stupid it has actually made you smile?”

I had an overwhelming response, some of the 95 things NOT to say to someone with EDS will make you laugh, others will leave you speechless or shaking your head in disbelief. What they will make you feel, I hope, is that you are not alone in this journey.

Please feel free to add your own in the comments. I’m sure that you will relate?

Sarah 🙂

 

1. Headteacher: “We need a date in writing from a consultant when your son will be well”.

Sarah Wells

 

2. Consultant: “We know she has hEDS but we don’t like to label them, is it because you want to claim benefits?”

Vicki Mayor

 

3. “EDS is a positive thing as you can be a great dancer or gymnast”.

Kirsten Crossman

 

4. CAMHS therapist: “The Doctor upstairs says Chronic Fatigue isn’t part of hEDS”.

Julie Mcgrory

 

5. A Paediatric Consultant Gastroenterologist told me that of course EDS doesn’t affect the gastric system and I was stupid to suggest it did.

Charlotte Saunders

 

6. GP Appointment: examination of my daughter says “Well your very bendy!”

Grainne Sanchia Watts

 

7. My daughter’s GP (not her GP anymore needless to say!) when she was being denied a diagnosis and we wanted a second opinion, told her “Only people who are pretty much contortionists get referred to Hypermobility clinics”.

Tanya Beechey

 

8. Paediatric Consultant – “Don’t worry about it because you will grow out of it when your older”.

Kaz Temple

 

quote 'don't worry about it because you will grow out of it (EDS) when you are older' Kaz Temple

 

 

9. Last night at a college open evening, we explained the condition and ask about support, they told my son to practice walking across busy roads from now until September as they were sure it would help because (mom) is overprotective taking him to school by car.

Eleanor Speed

 

10. Put in writing by paediatric rheumatologist:  “Has EDS III but at least it’s not a serious one”.

Sandie Reid

 

11. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it!” Yeah right….. Lol

Deb Wood

 

12. (Otherwise lovely) GP to me after reading report from rheumatology/genetics diagnosing daughter with hEDS: “No I didn’t mean this kind of thing; I meant did rheumatology think she had any REAL problems?”…

Anonymous

 

 

 

13. This one was said to me not my kids by a rheumatologist: “EDS doesn’t cause pain and POTS is imaginary pushed through by an overly excitable Dr Gall!” I honestly just sat there open mouthed!

Kerry Brown

 

14. “Don’t over medicalise her condition”, from Paed Consultant.

Kirsten Crossman

 

15. “POTS is just caused by inactivity & de-conditioning nothing else”.

Kirsten Crossman

 

16. “You don’t look like you have EDS”.

Hayley Airzee

 

17. Oh and the GP “You know EDS is rare don’t you?” As if being ‘rare’ means she couldn’t possibly have it! Haha. x

Deb Wood

 

18. “It’s all in your head”.

Tasha Whitmore

 

19. Paediatric Consultant: “Go home and eat curry to manage your constipation”, to my child with dysmotility.

Julie Mcgrory

 

20. “You need sectioning, it’s psychosomatic all in your head”. When my bladder, bowel and digestion failed they started to listen. X

Louise Pearse

 

21. A psychologist said…. “She doesn’t have EDS, she was seen dancing all around the ward by the nurses”.

Anonymous

 

22. Psychologist: “Stop looking for a medical solution to your problems.”

Chris Watson 

 

 

23. Unconvinced rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully”.

Chris Watson 

 

24. Social worker to student support: “Do you have a risk assessment for pushing R in her wheelchair in icy weather?”. One week later, RISK ASSESSMENT FOR ICY WEATHER, “In icy weather everyone involved in looking after R should take extra care”. The list is endless 

Chris Watson 

 

25. Saw optician as daughter’s eyes (which are 90% made of collagen) had deteriorated and reminded her of EDS history only to be told “Oh is that like a virus or something that will be fine in a couple of weeks?”.

Anonymous

 

26. Paediatrician told me “Ignore her in pain, distract her and feed her fish fingers”.  2 years later she was diagnosed JHS 6/9, global weakness, had orthotics, physio and hydro to name a few.

Caroline Bailey

 

27. I had a doctor tell me my shakes (which I now know is a benign tremor) was because “I had Irish ancestry and they had it hard during the famine!”

Wendy Marsh

 

28. “You can’t be in pain as you can move more than most. Here’s some antidepressants”.

Elaine Wyatt

 

29. “You can’t have EDS your skin isn’t stretchy enough”.

Kirsten Crossman

 

30. “Just before we get started, I don’t actually believe that EDS type three exists.  The others but not type three.”

Sarah Wells

 

31. Only had one comment from a GP which was: “How did you manage to get an appt in alder hey, he isn’t sick” in reference to the paediatrician sending him to the rheumatologist there.

Naomi Bannaghan

 

32. Rheumatologist to my 15 year old “You don’t HAVE to click your joints the pain is just imaginary, if you go off and do something else you’ll soon forget about it”! Yeah right….. Lol

Deb Wood

 

33. Unconvinced Rheumatologist to my daughter’s observation that she had met someone else with Functional Neurological Disorder: “You should choose your friends more carefully.”

Chris Watson

 

34. Oh another one to me rheumatologist: “I can’t see why the depo contraceptive injection is making you sublux more or give you more pain.” Baring in mind every time I was pregnant and through puberty I was suffering badly.

Elaine Wyatt

 

35. Orthopaedic to my daughter after a trampoline injury at school and the cold left her with mobility problems: “1) You didn’t dislocate your hip, you would have had to be hit by a car! 2) Stop resisting me, I know you can lift your leg and 3) You can’t have hydrotherapy today – you will drown!” this was ALL part of ONE CONVERSATION same day and he denied saying all of it at the CIN meeting!!!

Anonymous

 

36. I was told by a specialist hypermobility physiotherapist that: “Of course your hip isn’t dislocating – you wouldn’t be able to cope with the pain” 🙄

Charlotte Saunders

 

 

 

37. How about “I really don’t think your joints sublux as you would be in much more pain”  😫

Sandra McCallum

 

38. Health visitor: “I don’t think there’s any problem with her I’m more inclined to think child abuse and/or poor parenting… oh and her university goals? I mean really I think dole queue or wiping bottoms is more apt don’t you?”

Nybee Carter

 

39. I had been explaining to a physio about my then 2 year old waking in the night screaming with leg pain, limping and getting swelling at her joints… She then said to me “Do you think that maybe she is copying her big brother because he has joint problems?!” I replied well if she is, she needs an Oscar to perform like that, especially at 2am in the morning.  x

Kate Emery-Burns

 

40. From a cardiologist who wasn’t even my consultant the nurse just needed an ok for the tilt table. The consultant walks in and says oh is this the lady with eds. Looks at me all strapped to the table……… WELL you haven’t got EDS you’re not skinny and lanky!!!!!!!!!

Katarina-Gabriella Leake

 

41. “You are being bullied at school or controlled at home!!” – that was fun my normally gentle daughter told her where to go in no uncertain terms  😂

Wendy Marsh

 

42. “He’s not hypermobile – he only scores a 4 on the Beighton score.”  (He’s an 8 and professor Grahame laughed because the only non hypermobile joint he could find was his toes).

Jennifer Bear

 

43. We got a score of 10 from our knowledgeable rheumatologist which I thought was pretty impressive.

Chris Watson

 

44. “We are going to discharge you because there’s nothing more we can do for your 8 yr old son and you don’t want too many professionals involved do you!!!”  Said his paediatrician. I mean honestly. The boy is 8. Just because he doesn’t know how to support him.

Annelisa Neilson

 

45. The OT left a PenAgain pencil and a writing slope for my son then in year 2 to help him as his fingers and wrists were super bendy. After a week we went in to find the teacher had taken both off him and was going to send them back. Her reason, “the slope takes up too much space and his handwriting hasn’t improved at all so it was a waste of time”.

Naomi Bannaghan

 

46. Then there was my GP trying to refer me to a cardiologist for POTS as basic sit down stand ups in GPs office was very positive. The cardiologist said “They don’t accept referrals as POTS isn’t real.” So a rheumatologist decided to write in a report all cardiovascular events investigated and negative.

Elaine Wyatt

 

47. When I mentioned to my child’s rheumatologist about the new heading “hypermobility spectrum disorder” which was met with a blank face and the rheumy said to my child “Oh your mum even has a new name for what you have”.

Erin Devane

 

48. “I’d like to discount your previous diagnosis of HEDS and POTS and start again from scratch, looking first into Chronic fatigue syndrome! Because I think those diagnoses are questionable.” Paediatrician talking about my 14 yr old daughter who was diagnosed by Prof Grahame and since has had it confirmed by a further 4 consultant specialists and numerous OTs, Physios, A&E staff etc!!! Didn’t make me smile though, it made me cry for 2 days!!!

Katy Pascoe

 

49. Hospital registrar refusing an x-ray for a dislocated knee because if it was dislocated then her leg would be straight not bent as a person automatically straightens a joint when it dislocates. He then offered to pull it straight cos it was just cramp!!!!

Rebecca Jayne

 

50. Paediatrician: “You have a healthy child…stop looking for answers”. ….while my child held a puke bowl, had vomited just before the appointment, had a rash, had all over pain, couldn’t eat, couldn’t sleep and was diagnosed with shingles the NEXT day (after a visit to an acupuncturist…me NOT stopping to look for answers!!)…

Erin Devane

 

51. “All children are hypermobile”.

Wendy Marsh

 

52. I had a SENCO tell me that my son “Couldn’t have an EHCP because they don’t cover health issues”… umm I thought that was why it was called an Education and Health Care Plan????

Charlotte Saunders

 

53. “Don’t you think you daughter looks rather Downsy?” …. said when my daughter was 8 month old by a neonatal consultant at a check up !! I think my response was “err no… I think she looks rather daughtery but you sound rather nasty”.

Victoria Searle

 

54. Another time, while my daughter was writhing in pain with her stomach a doctor said “There’s nothing wrong with you hop off the bed, you can go home” when we insisted she had a scan, turned out she had a cyst the size of a tangerine! That was one embarrassed quack!!…. He was sorry I suppose but at that stage we had met too many doctors who had been rude and condescending.

Wendy Marsh

 

55. Don’t forget how he adjusted the seat higher before I jumped down 😂

Eleanor Lydwina Marsh

 

56. Orthopaedic surgeon to my 14 year old daughter 1 year before EDS diagnosis “You can’t dislocate without serious injury. Go out and ride a bike, that will sort you out”.

Rachel M Clark

 

57. A former head teacher in mainstream laughed when telling me my daughter was just naughty & wouldn’t conform. She also said she’d never get a Statement of Needs. My daughter was diagnosed ASD & Hypermobile, got her Statement & has gone on to attend an ASD school.   x

Debbie Summerskill

 

58. My 6 year old daughters Paediatrician didn’t know her Rheumatologist and physio diagnosed hypermobility EDS, when I asked why he hadn’t considered it he said she doesn’t look like she has it ( I counted to 10) then handed him the diagnosis in writing.  😬

Vanessa Gain

 

59. I  saw a physio with my daughter and said I was concerned it was EDS rather than hypermobility she said “Well do you watch coronation street? Izzy off there has EDS that’s EDS and clearly ur daughter hasn’t got that”.

Jane Pilley

 

 

 

60. When asking my child’s locum physiotherapist for advice managing chronic fatigue in my EDS, ME/CFS teen last Christmas.  “Just be positive, Merry Christmas”.

Sarah Wells

 

61. “There is nothing wrong with you, you are a normal, healthy girl” ….”Then why do my knees dislocate so often?”……”It’s very common in young people”…. “Nobody else in my school has this happen!”  😂

Anonymous

 

62. I went to the doctor on the advise of my physio who was concerned about my hip thinking I may have a tear inside so I explained to the doc the pain locking hip etc and his response was “I don’t no anything about your condition so I’ll have a read up about it and give u a ring”. Never heard from him again. Oh and he printed me off a leaflet on hypermobility in children. I’m 37. lol

Jane Pilley

 

63. Today GP stated she doesn’t know why my daughter would possibly need a wheelchair, despite being the person to refer my daughter to wheelchair services in the first place.

Kat Murray

 

64. “Sure EDS doesn’t cause tummy pain!”…psychiatrist.

Erin Devane

 

65. GP to my 14 year old daughter after 4 years of disabling joint pain when we requested to see a different rheumatologist as we suspected hEDS (her big sister already diagnosed). “You’re a fit and healthy young lady, I don’t understand why you would want this label” this is the same GP who googled POTS in front of us and was appalled at my suggestion of adding extra salt to her diet…

Sue Martin

 

66. The Senco in our first meeting said “There is nothing to worry about, my daughter was hypermobile and she stiffened up as she got older and is fine now”.

Naomi Bannaghan

 

67. My twin daughters teacher who is also the school SENCO told me my girls should take risks, they both have complex needs, including physical disabilities but apparently I’m an overprotective parent when I guide them while they climb slides etc.

Nula Jackson

 

68. Told my daughter had growing pains and when I mentioned the falls was told, “It’s just uneven ground!!”

Wendy Graham

 

69. To my son by a physio: “Hypermobility does not hurt and EDS is not genetic stop listening to your Mum as you’re worrying so much it’s giving you tummy problems.”

Elaine Wyatt

 

 

 

 

70. The reason I had my daughter ‘officially’ diagnosed was because I tried to ask a locum GP a question and got told I was an over protective mother who had too much time on her hands to Google things….

Belinda Isted

 

71. “She can’t have EDS, she would have had it since birth”.

Tania Bray
 
 
72. Deputy Head in team meeting where we were trying to reduce number of GCSEs as she had missed most of year 10 and was on 8 hours a week schooling: “She’s a bright girl, she can mug up on Maths in the Easter holidays”.

Chris Watson

 

 

73. When I see a new doctor, I tell them I have EDS and they reach out and pinch your cheek with a befuddled look on their face. You know that they have only read about it and the skin effects are the only part they remember! (I have only met one Dr. in my lifetime that had actually seen EDS before so I’ve had my cheek pinched an awful lot!)

Onale Thomas

 

74. “Oh, what party tricks do you have?”

Kaytee Marie

 

75. School Vice Principal questioning why a consultant and a physiotherapist had insisted on laptop use for what they said were the most flexible fingers they’d ever seen: “But we’ve even had children in wheelchairs who can write”.

Michele Morgan

 

76. That you can’t diagnose hypermobility in children as all children are hypermobile.  :/

Kim Neige Guillot

 

77. A teacher commented when we brought his buggy to collect him in year 1 as we had a mile walk and the last bit uphill was always a struggle on his knees, commented “I know you’re think you’re trying to help him but keeping him in a pushchair is just stopping him from using his legs and building up strength”.

Naomi Bannaghan

 

78. “Just wait until you get old.” That ticks me off the most. Your old and obviously functioning. I have had days in the bed incapacitated since I was 23. (now 47)

Tracey Scott 

 

79. My sons first teacher accused me of having Munchhausen’s by proxi. As he looks normal. Yeah I answered till he dislocates!

Anonymous

 

80. An orthopaedic surgeon telling me he could take a 100 people in off the streets and 5 or 6 could have the same neck issues show up on a scan but have no pain. Charged me over 200 euro and told me to get acupuncture. Left me nearly paralysed. Five years on and two surgeries later. Also same doctor told me I had Bursitis when I need a hip replacement.

Sylvia Kennedy

 

81. I had a doctor tell her “She can’t be that ill”  as he’s never had anyone in so much pain they can’t be touched – turns out her list of ailments and complications were taller than his height lol….

Wendy Marsh

 

 

 

82. This was said to me not my daughter, when an orthopaedic consultant was examining my joints. He got to looking at my hips, put my legs together with knees bent then proceeded to pull them both outwards till they were flat down on the examination bed on each side, he chuckled to himself, looked at me and then said, “gosh yes you are very flexible aren’t you – your husband’s very lucky isn’t he!” In a really pervy way, totally inappropriate and insulting and I couldn’t get out of there fast enough. 😡

Anonymous

 

83. My GP best suggestion for muscle cramps and joint pain was to rub coconut oil on myself….

Peter Powell

 

84. One of our previous GPs refused to refer for connective tissue disorders and was harping on about getting a formal diagnoses for autism, which we didn’t want at that time.

Old GP: if we can diagnose him with autism he will get lots of support from the LA for home education.

Me: I am a trustee of the largest home education charity in the country, I know what I am saying when I say there is no support for home education from the LA. I want Marfans eliminated as it is a life limiting condition.

Old GP: Oh yeah…he does show signs of that… I will refer you then.

He initially referred us to haematology!

Abbie Green

 

85. A physio said “I refused treatment” and refused to treat me again as I said I’m allergic to chlorine (badly) and I couldn’t use the hydro pool. It’s all over my medical notes I’m allergic and set of asthma and burns skin.

Elaine Wyatt

 

86. “The pain you are experiencing is like when a soldier looses his leg but can still feel pain in it” from paediatric consultant.

Jane Pickin

 

87. From pain management clinic: “We don’t up doses in EDS patients”.  Because apparently WE don’t get acclimated like EVERYONE else who has ever taken pain meds consistently. OR because my pain can’t possibly be getting WORSE as I age and EVERY joint in my body is becoming riddled with osteoarthritis.

Jennifer Young

 

88. Rheumatologist “You don’t have full blown EDS as you don’t have the vascular type!”

Anonymous

 

89. Seeing a GP about ongoing pain and falls for my daughter and the first thing doc says is “What exactly r u expecting from this appointment u must want something cause u keep coming back”. Umm let me think.

Paula Hampton

 

90. Doctor: “You don’t have to worry unless it’s Marfans…”

Libby Listens Bassnett

 

91. GP: “I think that the BP monitor may be faulty – no one has results like that”.

Sarah Wells

 

92. At 14 I was diagnosed with Narcolepsy and very depressed. Doc – “What do you like doing”? Me – “horse riding”, Doc- “excellent,”. Looks at my mum, “she needs a horse” Mum ” yes of course, and I’m guessing the NHS will supply one”????  😂

Tanya Newing

 

93. My daughter has hearing loss from EDS and in 5th grade a substitute told her to take the chewing gum out of her ears… they were the pink molds for her hearing aids. Lol

The kids actually laughed at the teacher…

Amy DeWitt Marek 
 
 

94. My dd pead keeps telling me to buy a trampoline for her constipation. I am sure it would help but I am not buying one!

Tania Bray

 

95.  “Vascular EDS isn’t that serious”! ….pain specialist

Erin Devane

 

(First published on My Stripy Life December 2017.)

Add yours in the comments 👇🏻

 

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