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. Ā 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 donāt 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 donāt quite get it right! And sometimes they clearly donāt 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 wasnāt alone in all of this so I asked some EDS friends and parents a question āWhat is the one thing that someone has said to you that has been so ridiculously stupid it has actually made you smile?ā
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 š
1.Ā Headteacher: āWe need a date in writing from a consultant when your son will be wellā.
Sarah Wells
2. Consultant: āWe know she has hEDS but we donāt like to label them, is it because you want to claim benefits?ā
Vicki Mayor
3.Ā āEDS is a positive thing as you can be a great dancer or gymnastā.
Kirsten Crossman
4.Ā CAMHS therapist: āThe Doctor upstairs says Chronic Fatigue isnāt part of hEDSā.
Julie Mcgrory
5. A Paediatric Consultant Gastroenterologist told me that of course EDS doesnāt affect the gastric system and I was stupid to suggest it did.
Charlotte Saunders
6.Ā GP Appointment: examination of my daughter says āWell your very bendy!”
Grainne Sanchia Watts
7.Ā My daughterās GP (not her GP anymore needless to say!) when she was being denied a diagnosis and we wanted a second opinion, told her āOnly people who are pretty much contortionists get referred to Hypermobility clinicsā.
Tanya Beechey
8.Ā Paediatric Consultant ā āDonāt worry about it because you will grow out of it when your olderā.
Kaz Temple
9.Ā 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: Ā āHas EDS III but at least itās not a serious oneā.
Sandie Reid
11.Ā Rheumatologist to my 15 year old āYou donāt HAVE to click your joints the pain is just imaginary, if you go off and do something else youāll soon forget about it!ā Yeah rightā¦.. Lol
Deb Wood
12.Ā (Otherwise lovely) GP to me after reading report from rheumatology/genetics diagnosing daughter with hEDS: āNo I didnāt mean this kind of thing; I meant did rheumatology think she had any REAL problems?āā¦
Anonymous
13.Ā This one was said to me not my kids by a rheumatologist: āEDS doesnāt cause pain and POTS is imaginary pushed through by an overly excitable Dr Gall!ā I honestly just sat there open mouthed!
Kerry Brown
14.Ā āDonāt over medicalise her conditionā, from Paed Consultant.
Kirsten Crossman
15. āPOTS is just caused by inactivity & de-conditioning nothing elseā.
Kirsten Crossman
16.Ā āYou donāt look like you have EDSā.
Hayley Airzee
17.Ā Oh and the GP āYou know EDS is rare donāt you?ā As if being ārareā means she couldnāt possibly have it! Haha. x
Deb Wood
18.Ā āItās all in your headā.
Tasha Whitmore
19. PaediatricĀ Consultant:Ā āGo home and eat curry to manage your constipationā, to my child with dysmotility.
Julie Mcgrory
20.Ā āYou need sectioning, itās psychosomatic all in your headā. When my bladder, bowel and digestion failed they started to listen. X
Louise Pearse
21.Ā A psychologist saidā¦. āShe doesnāt have EDS, she was seen dancing all around the ward by the nursesā.
Anonymous
22.Ā Psychologist: āStop looking for a medical solution to your problems.ā
Chris WatsonĀ
23.Ā Unconvinced rheumatologist to my daughterās observation that she had met someone else with Functional Neurological Disorder: āYou should choose your friends more carefullyā.
Chris WatsonĀ
24.Ā Social worker to student support: āDo you have a risk assessment for pushing R in her wheelchair in icy weather?ā. One week later, RISK ASSESSMENT FOR ICY WEATHER, āIn icy weather everyone involved in looking after R should take extra careā. The list is endlessĀ
Chris WatsonĀ
25. Saw optician as daughterās eyes (which are 90% made of collagen) had deteriorated and reminded her of EDS history only to be told āOh is that like a virus or something that will be fine in a couple of weeks?ā.
Anonymous
26.Ā PaediatricianĀ told me āIgnore her in pain, distract her and feed her fish fingersā. Ā 2 years later she was diagnosed JHS 6/9, global weakness, had orthotics, physio and hydro to name a few.
Caroline Bailey
27.Ā I had a doctor tell me my shakes (which I now know is a benign tremor) was because āI had Irish ancestry and they had it hard during the famine!ā
Wendy Marsh
28.Ā āYou canāt be in pain as you can move more than most. Hereās some antidepressantsā.
Elaine Wyatt
29.Ā āYou canāt have EDS your skin isnāt stretchy enoughā.
Kirsten Crossman
30.Ā āJust before we get started, I donāt actually believe that EDS type three exists. Ā The others but not type three.ā
Sarah Wells
31. Only had one comment from a GP which was: āHow did you manage to get an appt in alder hey, he isnāt sickā in reference to the paediatricianĀ sending him to the rheumatologist there.
Naomi Bannaghan
32.Ā Rheumatologist to my 15 year old āYou donāt HAVE to click your joints the pain is just imaginary, if you go off and do something else youāll soon forget about itā! Yeah rightā¦.. Lol
Deb Wood
33.Ā Unconvinced Rheumatologist to my daughterās observation that she had met someone else with Functional Neurological Disorder: āYou should choose your friends more carefully.ā
Chris Watson
34.Ā Oh another one to me rheumatologist: āI canāt see why the depo contraceptive injection is making you sublux more or give you more pain.ā 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 didnāt 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 canāt have hydrotherapy today ā you will drown!ā 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: āOf course your hip isnāt dislocating ā you wouldnāt be able to cope with the painā š
Charlotte Saunders
37.Ā How about āI really donāt think your joints sublux as you would be in much more paināĀ š«
Sandra McCallum
38.Ā Health visitor: āI donāt think thereās any problem with her Iām 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 donāt you?ā
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 āDo you think that maybe she is copying her big brother because he has joint problems?!ā I replied well if she is, she needs an Oscar to perform like that, especially at 2am in the morning.Ā x
Kate Emery-Burns
40.Ā From a cardiologist who wasnāt 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 tableā¦ā¦ā¦ WELL you havenāt got EDS youāre not skinny and lanky!!!!!!!!!
Katarina-GabriellaĀ Leake
41.Ā āYou are being bullied at school or controlled at home!!ā ā that was fun my normally gentle daughter told her where to go in no uncertain termsĀ š
Wendy Marsh
42.Ā āHeās not hypermobile ā he only scores a 4 on the Beighton score.āĀ (Heās an 8 and professor Grahame laughed because the only non hypermobile joint he could find was his toes).
Jennifer Bear
43.Ā We got a score of 10 from our knowledgeable rheumatologist which I thought was pretty impressive.
Chris Watson
44.Ā āWe are going to discharge you because thereās nothing more we can do for your 8 yr old son and you donāt want too many professionals involved do you!!!ā Ā Said hisĀ paediatrician. I mean honestly. The boy is 8. Just because he doesnāt 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, āthe slopeĀ takes up too much space and his handwriting hasnāt improved at all so it was a waste of timeā.
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 āThey donāt accept referrals as POTS isnāt real.ā So a rheumatologist decided to write in a report all cardiovascular events investigated and negative.
Elaine Wyatt
47. When I mentioned to my childās rheumatologist about the new heading “hypermobility spectrum disorder” which was met with a blank face and the rheumy said to my child āOh your mum even has a new name for what you haveā.
Erin Devane
48.Ā āIād 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.ā 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!!! Didnāt make me smile though, it made me cry for 2 days!!!
Katy Pascoe
49.Ā 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: āYou have a healthy childā¦stop looking for answersā. ā¦.while my child held a puke bowl, had vomited just before the appointment, had a rash, had all over pain, couldnāt eat, couldnāt sleep and was diagnosed with shingles the NEXT day (after a visit to an acupuncturistā¦me NOT stopping to look for answers!!)ā¦
Erin Devane
51.Ā āAll children are hypermobileā.
Wendy Marsh
52. I had a SENCO tell me that my son āCouldnāt have an EHCP because they donāt cover health issuesā⦠umm I thought that was why it was called an Education and Health Care Plan????
Charlotte Saunders
53.Ā āDonāt you think you daughter looks rather Downsy?ā ā¦. said when my daughter was 8 month old by a neonatal consultant at a check up !! I think my response was āerr no⦠I think she looks rather daughtery but you sound rather nastyā.
Victoria Searle
54. Another time, while my daughter was writhing in pain with her stomach a doctor said “Thereās nothing wrong with you hop off the bed, you can go homeā when we insisted she had a scan, turned out she had a cyst the size of a tangerine! That was one embarrassed quack!!ā¦. He was sorry I suppose but at that stage we had met too many doctors who had been rude and condescending.
Wendy Marsh
55.Ā Donāt forget how he adjusted the seat higher before I jumped down š
Eleanor Lydwina Marsh
56. Orthopaedic surgeon to my 14 year old daughter 1 year before EDS diagnosis āYou canāt dislocate without serious injury. Go out and ride a bike, that will sort you outā.
Rachel M Clark
57.Ā A former head teacher in mainstream laughed when telling me my daughter was just naughty & wouldnāt conform. She also said sheād never get a Statement of Needs. My daughter was diagnosed ASD & Hypermobile, got her Statement & has gone on to attend an ASD school. Ā x
Debbie Summerskill
58. My 6 year old daughters Paediatrician didnāt know her Rheumatologist and physio diagnosed hypermobility EDS, when I asked why he hadnāt considered it he said she doesnāt look like she has it ( I counted to 10) then handed him the diagnosis in writing. Ā š¬
Vanessa Gain
59. I Ā saw a physio with my daughter and said I was concerned it was EDS rather than hypermobility she said āWell do you watch coronation street? Izzy off there has EDS thatās EDS and clearly ur daughter hasnāt got thatā.
Jane Pilley
60.Ā When asking my childās locum physiotherapist for advice managing chronic fatigue in my EDS, ME/CFS teen last Christmas. Ā āJust be positive, Merry Christmasā.
Sarah Wells
61.Ā āThere is nothing wrong with you, you are a normal, healthy girlā ā¦.āThen why do my knees dislocate so often?āā¦ā¦āItās very common in young peopleāā¦. āNobody else in my school has this happen!āĀ š
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 āI donāt no anything about your condition so Iāll have a read up about it and give u a ringā. Never heard from him again. Oh and he printed me off a leaflet on hypermobility in children. Iām 37. lol
Jane Pilley
63.Ā Today GP stated she doesnāt 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.Ā āSure EDS doesnāt cause tummy pain!āā¦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). āYouāre a fit and healthy young lady, I donāt understand why you would want this labelā this is the same GP who googled POTS in front of us and was appalled at my suggestion of adding extra salt to her dietā¦
Sue Martin
66. The Senco in our first meeting said āThere is nothing to worry about, my daughter was hypermobile and she stiffened up as she got older and is fine nowā.
Naomi Bannaghan
67.Ā 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 Iām an overprotective parent when I guide them while they climb slides etc.
Nula Jackson
68.Ā Told my daughter had growing pains and when I mentioned the falls was told, āItās just uneven ground!!ā
Wendy Graham
70.Ā The reason I had my daughter āofficiallyā 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 thingsā¦.
Belinda Isted
71.Ā āShe canāt have EDS, she would have had it since birthā.
Chris Watson
73.Ā 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 Iāve had my cheek pinched an awful lot!)
Onale Thomas
74.Ā āOh, what party tricks do you have?ā
Kaytee Marie
75.Ā School Vice Principal questioning why a consultant and a physiotherapist had insisted on laptop use for what they said were the most flexible fingers theyād ever seen: āBut weāve even had children in wheelchairs who can writeā.
Michele Morgan
76. That you canāt diagnose hypermobility in children as all children are hypermobile. Ā :/
Kim Neige Guillot
77.Ā 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 āI know youāre think youāre trying to help him but keeping him in a pushchair is just stopping him from using his legs and building up strengthā.
Naomi Bannaghan
78.Ā āJust wait until you get old.ā 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 ScottĀ
79. My sons first teacher accused me of having Munchhausen’s by proxi. As he looks normal. Yeah I answered till he dislocates!
Anonymous
Sylvia Kennedy
81.Ā I had a doctor tell her āShe canāt be that illā Ā as heās never had anyone in so much pain they canāt be touched ā turns out her list of ailments and complications were taller than his height lolā¦.
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 onĀ each side, he chuckled to himself, looked at me and then said, āgosh yes you are very flexible arenāt you ā your husbandās very lucky isnāt he!ā In a really pervy way, totally inappropriate and insulting and I couldnāt get out of there fast enough.Ā
Anonymous
83.Ā My GP best suggestion for muscle cramps and joint pain was to rub coconut oil on myselfā¦.
Peter Powell
84.Ā 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 didnāt want at that time.
Old GP: if we can diagnose him with autism he will get lots of support from theĀ 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 yeahā¦he does show signs of that⦠I will refer you then.
He initially referred us to haematology!
Abbie Green
85.Ā A physio said āI refused treatmentā and refused to treat me again as I said Iām allergic to chlorine (badly) and I couldnāt use the hydro pool. Itās all over my medical notes Iām 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”Ā fromĀ paediatricĀ consultant.
Jane Pickin
87.Ā From pain management clinic: āWe donāt up doses in EDS patientsā. Ā Because apparently WE donāt get acclimated like EVERYONE else who has ever taken pain meds consistently. OR because my pain canāt possibly be getting WORSE as I age and EVERY joint in my body is becoming riddled with osteoarthritis.
Jennifer Young
88. Rheumatologist āYou donāt have full blown EDS as you donāt have the vascular type!ā
Anonymous
89. Seeing a GP about ongoing pain and falls for my daughter and the first thing doc says is āWhat exactly r u expecting from this appointment u must want something cause u keep coming backā. Umm let me think.
Paula Hampton
90.Ā Doctor: āYou donāt have to worry unless itās Marfansā¦ā
Libby Listens Bassnett
91.Ā GP: āI think that the BP monitor may be faulty ā no one has results like thatā.
Sarah Wells
92. At 14 I was diagnosed with Narcolepsy and very depressed. Doc ā āWhat do you like doingā? Me ā āhorse ridingā, Doc- āexcellent,ā. Looks at my mum, āshe needs a horseā Mum ā yes of course, and Iām guessing the NHS will supply oneā????Ā š
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 teacherā¦
94.Ā 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.Ā Ā āVascular EDS isnāt that seriousā! ā¦.pain specialist
Erin Devane
(First published on My Stripy Life December 2017.)
Add yours in the comments šš»
Join Our Tribe
Chronically Empowered Women is FREE private Facebook community of women who have chronic illness… and there are loads of us with EDS!Ā Ā
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.Ā
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!
My cousin was a GP here in Florida. When I found out about EDS I told him I have it because my dad and his dad are brothers. He told me I couldnāt possibly have EDS because āthatās a death sentenceā. My dad, brother, daughters and I have classical.
Hey Joy, thanks for sharing your experience here too. I wish I was surprised to read this, but sadly not. At least you can see that you are not alone š