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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Evolution. Life After My Rare Disease Diagnosis.

Evolution. Life After My Rare Disease Diagnosis.

Rare Disease

 

When I put pen to paper (or fingers to keys) I did not know what I was going to write, I had no plan or agenda. I just wanted to tell you what it has been like living with my conditions. It was 20 years ago when I was diagnosed with my first rare disease. 300 million people are living with a rare disease worldwide. There are over 6000 different rare diseases with 72% of them being genetic, and 70% of those genetic rare diseases start in childhood.

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I have evolved. This is my evolution.

 

Mother and daughter zebra standing facing each other with their heads touching (as if they are hugging)

 

Evolution

 

I never understood why people wrote in diary’s and documented their life when I was younger, I saw it as a complete waste of my time.  Plus, I would NEVER want anyone to find them and read my inner most thoughts and secrets, they were safer in my head for sure.  The parties, the people, the outfits, the hairstyles, the things that I thought were a great idea at the time… things that I’m glad were a phase.

Those times were fun but I am happy with the blurry half memories of the good bits and the laughter.

Then in my 20’s after I had not long given birth to my first child, in the midst of the hormones, the tiredness and a carrying around a body that decided not to work I was diagnosed with Charcot Marie Tooth disease.

My life as I knew it changed that day.

The outside world never saw it… I think that I hid it well? But right there in that moment I only really heard the words progressive, hereditary, incurable.

Who was I now? What did this mean? For me, my baby, my husband? Would he leave me? I wouldn’t blame him. Would I have more kids? Should I? When would I stop walking? How much pain would I have? Could anyone answer my questions? My inner voice was on a constant loop, noisy, frightened and ineffective.

I decided to pretend that I was OK, I hoped that by pretending it would become my truth. But the worry of the future and the grief for the life that I thought that I would live was like a vice around my chest every day.  So much so that I couldn’t take a proper breath.

I felt its weight as a pressure that I had to fight against every single day.

I had surgeries, I got through them.  I had more kids and with each one and with time it got a little lighter but it never really went away.  I became a master at not letting it show and learnt how to share my space with it.

What all this did take was energy, and this really was a problem.

Fast forward another 10 years and I was a mum of three.  A good mum, wife, we had a nice house, a good car, I really loved my husband and he really loved me. Phew!

But most of the time I was tired, like wading through mud and I hurt A LOT, an overwhelming pain where I wanted to cry most days. Which just made planning anything impossible and generally living quite tough, or it certainly felt that way.

We knew that our youngest has something going on, she was 18 months old and despite trying hard couldn’t walk.  She was not lazy.  She tried desperately hard to keep up with her brothers but when she stood sometimes her feet would actually face backwards. So we took her to a top Dr at a top children’s hospital… we paid.

In that appointment we were told that ‘she was within normal limits’. We knew better. But what really struck me, almost like lightening from the sky as I stepped out onto the pavement from that hospital was ‘Oh! this is not going to be easy’.

In that moment I woke up. In that moment a fire ignited in me that started like a flicker but in time would become a furnace inside me, a fire that would expand in me and allow me to breathe fully again. In that moment my little girl didn’t just have a mum I became her cheerleader, her advocate, her person.

Not long after that I began to write. Not a diary, but about things that happened to us; dance shows, hospital visits, holidays, tests and all the diagnoses that followed. My writing became a way for me to process my thoughts and as I did this I began to feel again. This had been the missing piece.

Over the last 10 years to be able to cope with my life I had shut down. Because I was living in my head, I was not able to feel in my body – because to feel in the beginning would have been overwhelming, unbearable.  Shutting those emotions out was my way of keeping me safe, but when you shut out the sad, angry, messy emotions you also shut out joy, happiness… you stop feeling – anything.

Writing let me process my thoughts and know that they are just that… thoughts.  They are not truth.  I had a choice about how I viewed my world.  I could view it through shit tinted spectacles or choose to see it another way.  I chose to see things differently.

And this has been the magic.

This is where I took back control.

Slowly I went back to re-write the circumstances of my own diagnosis, story by story and looked at things through a new compassionate lens.

Mindset became my secret success hack.

As I dealt with the past my focus was only on the present and the future. We can get so caught up in what has happened or what might be and tell ourselves stories about what may or may not be true we stop seeing what is true. What is right in front of us. What we have.

The day I lit that fire was the start and writing added fuel to that fire, so did the love of my husband, my children’s laughter, my family, the broken health and education systems, a glass of wine on a Friday night with my best friend, my kids diagnoses’, injustice, the sunrise on a frosty morning, a cup of tea, great sex, my son getting sick with ME and all the goodness in the world.

This ignited my fire for life again… all the messy, f**ked up, emotional parts of life that are just that – real life.

I don’t know when it happened, I suppose it was gradual process, but the vice loosened its grip till one day it had completely gone and I hadn’t even noticed. It wasn’t like a switch that flipped or a conscious decision that I made just one day I thought ‘Oh that’s not a thing for me anymore’.

I’d found myself again and I was showing my kids how to love deeply, live freely and advocate like a MF tiger.

Looking back helps you to see how far you have come, living there is not healthy.

Celebrating that is empowering.

Life will never be perfect. That is life. In accepting that, there lies the freedom.

 

More Information

The National Organization for Rare Disorders (NORD)

Ehlers-Danlos Support UK

Charcot Marie Tooth UK

 

Are YOU ready?

 

Deciding that you are ready to strive toward your goals and take control of your life is one hell of a big deal.

Are you ready for the acceptance that brings you freedom, to stop shutting out your messy emotions that are keeping you safe, to be brave?

Let me introduce you to my signature coaching programme CHRONICALLY EMPOWERED – and we’ll customise it together just for you! (No obligation).

CHRONICALLY EMPOWERED WOMEN

 

Our private Facebook group is a safe place for women with long term, chronic illness or disability (or those who are carers of kids with chronic illness).

It is a space to be you, to be honest that you want more than this, to be honest about not knowing how to start. A place where we can lift each other up and support each other. Where you can share your story and where we can inspire each other with our wins.  It’s about understanding that life can be tough but also that we can do hard things. About recognising your own unique superpowers! Come and join us… we’d love to have you. 🙂

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The Top 10 Surprising Health Benefits Of A Cup of Tea

The Top 10 Surprising Health Benefits Of A Cup of Tea

The great British cup of tea… I have to admit as I sit here cup in hand, I am slightly addicted.  Meeting up with my with my girl friends at the local coffee shop on a Friday morning wouldn’t be right for me without my nice cup of tea.  In recent years coffee has made an increasing dent in the British cuppa and around our table each Friday morning I am often the only one with a tea where latte, hot chocolate and cappuccino reign.

My relationship with tea is becoming  rather love/ hate recently.

It all started one Saturday morning, which is dancing morning in our house.  As we live closest to the hall the mums all pop back for a cuppa while the kids are in class.  It’s a win win, they get to dance, we get to chat and drink tea.  So I pop on the kettle and make our drinks and while chatting I carry a couple of cups through to the front room.   Big mistake, before I even have time to react I’m down, face planting the floor.  You’d actually be surprised how far a cup of tea actually goes when catapulted through the air!

In my house I’ve already ditched the kettle in favour of hot water plumbed in as wrist dislocations were becoming commonplace.  However I didn’t expect the wrist dislocation in Costa while I was sat happily minding my own business.  It caused me to spill almost my whole cuppa and scold myself in the process.  A switch away from a traditional tea cup to a take away cup was all that was needed, now I can use two hands and avoid getting wet!

When my dysautonomia symptoms are flaring a cup of tea can be both a blessing and a curse.  On the one hand it can be a little pick me up when my energy levels are waning but of the other the caffeine can also send my heart racing and a cuppa before bed is a definite no no as it can stop me from sleeping.  Decaf tea just doesn’t hit the spot.

But you can’t deny the satisfying hug of a warm cup of tea at the end of a long day or the problems that can be solved by simply popping on the kettle and having a chat.  The British have known for years that tea is the very lifeblood of our nation, but I’m surprised to learn the that this fact now seems to be rooted in science.  Studies have shown that tea can offer more than a simple caffeine fix with tremendous health benefits, all the more reason to keep drinking it I say.  So here are my top 10 reasons to drink tea every day.

Sign saying 'tea people'

#1 A Cup of Tea reduces the risk of heart disease

Tea can potentially improve the blood flow in the body, by widening arteries and reducing the risk of clots.  It also contains antioxidants called ‘flavonoids’, which may slow down the onset and risk of heart disease.

 

#2 Tea hydrates your body

Although water is the first choice to rehydrate the body, drinking a cup of tea may be another good option health-wise. Being rich in caffeine, tea provides you a rich and flavoursome source of water along with a wide range of nutrients.

 

#3 Tea prevents tooth decay

Believe it or not, a regular supply of tea can really strengthen your teeth and lower the risk of tooth decay. Tea is a great source of fluoride, which can bolster tooth enamel. The antioxidants contained within a cuppa have also been known to fight against bacteria and gum disease.

 

#4 A Cup Of Tea can make you slim

Some scientific studies have suggested that regular intake of tea (especially in the morning and before lunch) complements your weight loss goal. A cup of tea prevents you from putting on weight along with speeding up the burning of calories. If nothing else, it is less fattening than sipping on a soft drink.

 

#5 Tea boosts your memory power

Extensive research has shown that the combination of caffeine and L-Theanine, a naturally-occurring amino acid found in tea, improves reaction time and memory, while increasing focus and concentration.

 

#6 Tea fights against dementia

To stay sharp, even as you age, drink tea, as it is thought to lower the risk of dementia by acting through multiple pathways, including those of nerve synapses and blood sugar regulation.  Many scientists believe that certain types of tea such as green tea, can strengthen the function of memory cells in the brain.  No wonder why our parents and grandparents used to drink so much tea!

 

#7 A Cup of Tea protects against cancer

Some recent studies have recently suggested that tea drinking could lower your chances of suffering from cancer. Several reports indicate that prostate, mouth and breast cancer cases are much lower amongst those who regularly drink five or more cups of tea a day as compared to people who do not drink tea. Although research in this regard is just coming into existence, the anti-cancer property is attributed to the presence of antioxidants in tea.

 

#8 Tea may help lower inflammation

Active compounds in tea can help to lower levels of inflammation and inflammatory reactions. As we well know inflammation is connected to almost every modern ailment, including arthritis, metabolic syndrome, and depression. Inflammation can also cause you to retain water and look puffy, so a few cups of tea can help you look and feel thinner.

 

girl holding a cup of tea

#9 Tea is an anti-allergen

A Japanese study has found that the tea polyphenol, EGCG, may be helpful for reducing pollen allergies. Tea may also reduce allergic response through quercetin, a flavanol naturally-occurring in tea, which is known to mitigate histamine response.  Which may be great for those with Mast Cell issues.

 

#10  A Cup of Tea may improve your overall health

Tea drinkers tend to be healthier, which is proven in research too, as tea drinking correlates with better health outcomes.  You can support your health, including your skin and body composition, with as few as 2-3 cups per day of this calorie-free drink.  Just don’t add sugar!

What is your little pick me up? Does tea hit the spot for you?

 

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Join The Community

The Thrive Tribe is a community of women who have chronic illness and is a great place for a cuppa and a chat. 

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive 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!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

Acceptance – Why it is so important when you have a chronic illness?

Acceptance – Why it is so important when you have a chronic illness?

Acceptance in human psychology is a person’s agreement to the reality of a situation, to be able to recognise a process or condition (in this case a chronic illness or health condition) without attempting to change it or protest it.  In simple terms getting your head around the cards that you have been dealt.

For many people who are dealing with a chronic illness the term acceptance can be tricky. If people are told by others to just accept their condition they can feel like they are being told to suck it up or to stop complaining. Which in fact if you think about it is the opposite of acceptance. These well wishers may be trying to help, but acceptance is a process that doesn’t just happen because someone suggests that it may be a good idea.

True acceptance involves, recognising your experience, accepting your reactions to it and working through them until you reach a point that you no longer want to fight or change the situation.  It’s alright to be angry, sad, or hurt by that reality, but the goal is to acknowledge the fact that there are some parts of your situation that you cannot change.

 

image of lady with a tear running down her face as she is processing the emotions involved in her chronic illness diagnosis

 

Accepting your condition

For me acceptance has been a journey that I have walked for nearly 20 years. When I was first diagnosed with CMT my life was completely turned upside down. The young successful adult that I had fought to become was no more.  I had a new baby, who I loved with all my heart, but my career was stolen by my dwindling mobility, I was struggling more than I ever had in my life.

I had two surgeries in quick succession and more planned. I was coming to terms with the fact that I had an incurable neuromuscular disease that was progressive with a 50% chance of passing it on to my child; coupled with the fact that the things that I had worked so hard for and that I felt defined my identity were being taken away from me.

A year or so down the line I thought that I had accepted this condition. What I could actually do was talk about the science behind it all with ease but I had not dealt with the emotions of it all and was still fighting myself to be an able bodied young woman and beating myself up about the career I didn’t have anymore.

It took two years, that and the third surgery to be successful for me to finally begin to come to terms with the diagnosis and accept what it meant for me, for my future and my now growing family.

Throughout this time I learnt to deal with the emotions that I felt, be it sadness, anger or anxiety by meeting them head on. In doing this I became more resilient and emotionally tough by allowing myself to feel what I was feeling helped me to move through it, and allowed me to turn my attention towards more meaningful things.

 

Accepting the implications for your future

Accepting the implications that my condition would have on my future was tough. I had it all planned out in my head – I had a first degree, had recently married the love of my life and we had brought out first home together, I was working hard in a job I loved and had been promoted.  Along came our first child and I envisaged working hard and having long summers away as a family. 

My body didn’t get the memo.  As it slowly fell apart so did my hopes and dreams for the future. I was unable to work and I began to question everything – if I wasn’t a teacher? who was I? 

What this actually gave me was a chance to step back and reflect on who I was and what I really wanted from my life. The inner work that is so important and often overlooked while we are pounding the treadmill, trying to have it all.  

The nature of chronic illness is that it is ongoing, and in many cases degenerative or permanent. Which means that your health can change at any time. So the process of acceptance can change over time as new symptoms may present and conditions progress further. Being resilient helps you to cope with these unforeseen circumstances.

When I had further diagnoses’ of EDS and PoTS ten years after the first, it was evident at this point that I had done the work. The process of acceptance that I had gone through before was replaced this time by relief and self-compassion. I was able to bounce back from these circumstances but also had a positive outlook throughout. I had learnt not just to handle the situation but how to.

 

Accepting the limitations that are now placed on your life or relationship

One of the hardest things has been to accept that I can’t do everything, that I have to manage my chronic illness’ as if they were a full time job, in order to lead a more normal life. To know that this has to happen, to admit that some things are hard for me and to know that if I try to do everything I will become ill, have more pain or not function for days.

I am constantly walking tightrope, if I balance carefully I may reach the other side unharmed, rush, plan poorly and I will most likely topple and pay for it later.

So, I have learnt to balance my life, management is the only option there is no cure or magic pill for my conditions.  For most long term conditions, even with medical treatments management is key to living well long term.

This has become so much easier for me as I have truly accepted my conditions and the impact that they have and will always have on my life. I recognised that I had little to no control over certain elements of my health made the decision to stop struggling against those. Validating, rather than minimising or rejecting my experience. I now honestly assess my condition, my options and my choices and place my time and energy on the things that I can control rather than those that I can not. And, I enjoy the freedom that comes from being in that position.

I slowly learnt that there is a time and a place to fight my illness but it is not 24 hours a day 7 days a week. Dropping the moment to moment struggle has been surprisingly freeing. I no longer fight constantly for it to be different, which has given me so much more energy to do the things that I love to do like meet friends for coffee or spend quality time with the kids.

I now make choices about my life rather than feeling like all the choices have been made for me.

Acceptance has given me back that control.

 

happy family enjoying time together after a chronic illness diagnosis

 

 

 

 

12 things that you can do today to help you to accept your chronic illness?

  1. Start where you are at right now – this is your journey.
  2. Accept that this is a process and due to the nature of chronic illness, (eg:- new symptoms or progression), the process of acceptance may change over time.
  3. Acknowledging that even though it’s not fair that you are ill, that it has happened, and you need to work with where you are.  Deal with your emotions head on.
  4. Avoid focussing on the good old days all the time, past is past – stop obsessing over “what if’s” and accept that this is the reality and you need to move on from here.
  5. Accepting that some of your past goals or plans may no longer be realistic, and allowing yourself to mourn this loss.
  6. Stop searching for a cure if evidence suggests one does not exist, and focus on managing & controlling your symptoms.
  7. Denial will not make your illness go away – you can accept that you do need treatment if your disease calls for it.
  8. Accepting that no matter how well you stick to your treatment, you do not have full control over your condition.
  9. Learn to adapt to adapt to uncertainty – flexibility will be your friend – have a destination but know that there are many roads that may get you there.
  10. Know that you are more than your illness – make plans, have fun, don’t compare yourself to others or your past self, grow.
  11. Accept that you may never have a satisfying answer to why this happened.
  12. Live.

Eating an Apple Metaphor

Acceptance is like eating an apple. 

You could be trying to lose a little weight or eat a little healthier, so instead of snacking on your usual slice of cake, you have an apple. You may “choose” an apple, but what will it be like to eat that apple? As you eat it, you start comparing it to the cake. With each bite, you’re thinking about how the apple isn’t as sweet, fudgy, and good as the slice of cake. Then, when you’re done, you eat the cake anyway.

Another way to experience eating the apple is to just let the apple be an apple, rather than needing or wanting it to be something it is not. Just notice the crispness of each bite, the juiciness, and the sweetness for what it is and not for what it isn’t, a slice of cake!

I believe that acceptance is the foundation for living well with a chronic illness, health condition or disability. And, by learning to just let the apple be the apple you will reach the stage in your chronic illness journey where you no longer want to fight or change the situation. 

This gives you energy and choices to manage your symptoms more effectively, evaluate what you want in the world and learn how to communicate better with everyone around you. Acceptance is often the first step in this process, where you commit to yourself and truly acknowledge who you are.  

Want to know more about acceptance and how I can support your journey to live chronically well >> lets talk 

 

 

 

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Join The Community

The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness, that pain and fatigue are getting you down. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive 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!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

What are you waiting for!

 

Rare Conditions – The Importance Of Supporting Mental Well-being

Rare Conditions – The Importance Of Supporting Mental Well-being

Now more than ever before it is important to support both mental and physical well-being in people with a rare disease diagnosis. Rare diseases affect approximately 3.5 million people in the UK (Rare disease UK), a condition is considered to be rare if less that 5 in 10.000 people are affected.

I have three conditions that fall into the ‘rare’ category, Ehlers-Danlos syndrome, Charcot-Marie Tooth Disease and Postural Orthostatic Tachycardia syndrome. I was at the front of the queue when they were handing them out, clearly! I now have my very own ‘rare’ children and work to support others with rare or chronic conditions as an NLP coach.  It is safe to say being a rare mum is just part of who I am.

One of the things I hear time and time again from other rare disease patients is how hard it is to secure their diagnosis in the first place, often taking years, sometimes decades to find out the name for their collective symptoms. Can you imagine that? Really. Think about how long it has been since the COVID pandemic started, feels like forever, right? Stuck in limbo, not having the answers, wondering what the outcome will be? Trying to stay positive but really a bit fed up. Imagine that is your health you are waiting for the answers to, in limbo, not knowing and probably feeling generally rubbish and scared.  Even the experts don’t have the answers. And it isn’t just months, but for years.

 

Picture of a zebra with the text 'Do you have a rare condition? The importance of supporting mental well-being'

 

There are many reasons why this is the case.

Have you heard the phrase ‘When you hear hoof beats, think horses not zebras?’ In medicine, the term zebra is used with reference to a rare disease or condition.  Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions but many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions.

True in my case, it was 26 years after I was first hospitalised unable to walk before I got my first ‘rare’ diagnosis, and a further 10 before the pieces were put into place for the second and third.

Often conditions have similar general symptoms making it hard to pin them down, this coupled with the fact that doctors are trained NOT to look for the rare conditions in the first place makes diagnosis times even more lengthy.

Waiting times to get to get to specialist services is often long, between 3-6 months is not uncommon, often longer, and when you do get there you may then have to be referred on to someone else.

We are human, so sometimes the symptoms we present with may not be typical. As these conditions are rare and therefore not something that practitioners are seeing day in day out, not being the ‘text book’ definition just confuses and delays things further.

In my daughter’s case having two conditions caused a non-typical presentation, delaying her diagnosis. Even though she likely had the conditions that I had.

Most rare diseases are complex and chronic, potentially life-threatening and go hand in hand with reduced quality of life. There is no surprise that there is an increase of mental health problems reported in rare disease patients and their families.

There is often a small network of care available as the condition is so rare, where patients often rely of charities for support and information.  Many doctors that you see will never have heard of your condition, let alone treated someone with it, so you will have to become the expert in your own condition.

There is also the problems associated with the visibility (or invisibility) of many rare conditions which often leads to misunderstanding amongst medical professional, family and friends.

Many people have a real adjustment period after diagnosis where they will experience a range of emotions as they come to terms with what their condition means for them and their life.

In a recent report on the mental health effects of living with a rare condition, campaign group Rare Disease UK found health professionals’ attitudes played a major role. The findings showed that 88% of patients and carers saying poor awareness of their condition by health professionals had a negative impact on their mental health, while 80% were negatively affected by health professionals not believing them. Read more about how medical gaslighting can fuel this here.

With the physical and mental elements of rare conditions are so intertwined it is my opinion that care should focus on supporting people with their emotional well-being and their everyday lives, not just on the physical symptoms.

Due to the nature of rare diseases patients are burdened by persistent symptoms which impact their quality of life leaving them overwhelmed.  If people are not supported, then this can lead onto anxiety and depression.

I believe that early support is vital. Support to manage the emotions surrounding diagnosis and acceptance and help developing a toolkit to manage their symptoms and overall wellness.  With flexibility, strength and resilience you are able to cope with the curve balls that your health will inevitably throw at you.

To learn to work with your illness not against it.

quote 'you need to learn to work with your health not against it!'

This view is echoed by baroness Blackwood the minister responsible for rare diseases, she has been lobbying to raise awareness after her own experiences during a 30-year wait to be diagnosed with Ehlers-Danlos Syndrome (EDS).  “Early diagnosis of a rare condition is extremely important. Not only does it end the often very stressful and exhausting diagnostic odyssey for a patient, it also means they can get the support they need much earlier, including for their mental health. We want to see a more holistic approach where treatment for mental health conditions is more closely integrated with the rest of a patient’s care.”

Patients that have had to fight hard for a diagnosis have often had to fight for the justification from professionals that their symptoms are physical and real. They may be reluctant to accept any help for their mental wellbeing. Either they feel they have come this far on their own so they don’t need professional support or they are firm in their beliefs that no-one is going to tell them it’s all in their head. Either way people that would truly benefit from support to process their emotions and thoughts surrounding the impact that their health condition has on their life and move forward positively, will likely refuse it.

This year the NHS has been stretched, at points often beyond capacity so while we are making progress on this in the UK I anticipate that it will take time leaving rare disease patients in limbo.

Coaching can bridge the gap in this service.  For pro-active patients willing to take control of their wellbeing a good coach can provide a non-judgemental space to explore emotions and ways to deal with issues that are stressful, frustrating or overwhelming. To help you to focus on what you are still able to do, rather than what you’ve lost and work with you to with you to identify and pursue new interests which will give you a sense of purpose and meaning. Sometimes, what you need more than ever is someone to support you with your medical team, helping you to prepare for appointments, ask the right questions and to understand what they tell you.

A coach is all these things and more and often obtaining this kind of support at the right point in the journey can mean that accessing mental health services further down the line may never be needed.

I love to talk about coaching and I am super passionate about advocating for rare and chronic conditions. If you want to have a conversation about how this may help you please book a call.

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Overwhelmed? 8 Steps To Feel Calm And In Control When You Have A Chronic Illness

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Last week I spoke about Imposter Syndrome, you can read about it here - What is Imposter syndrome and Do I have it? The first step in overcoming Imposter Syndrome is to acknowledge what you're feeling, and why. Start by keeping a journal or writing down your thoughts...

Join The Community

The Thrive Tribe is a community of women who have chronic illness.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive 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!

When you join the Tribe you can find your SELF CARE GUIDE FOR SPOONIE’S available in the files to download.

The 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

No Ones Life is As Perfect As Their Social Media Feed

No Ones Life is As Perfect As Their Social Media Feed

No ones life is as perfect an their social media feed

The explosion of social media over the last 15 years has opened doors for people in many ways;  It has the power to connect like minded people all over the world, at any time and it gives instant feedback and it increases your visibility. In the world of chronic illness it has given people the power to educate themselves about their conditions, to share and learn from each other’s expertise, allowing them to become truly empowered in their own health and wellness so that they can work with health professionals to manage their conditions long term. Personally, I have learnt so much online, instant access to information fuels my desire to know more, I have connected with some truly amazing people from all over the world that I wouldn’t have had the opportunity to do otherwise and it has opened doors for me to raise awareness about living with chronic illness in schools, hospitals and universities.

However, we must be mindful that this virtual world is just a snapshot of reality. People can be who they want to be.  The shiny pictures of your friends new house hide the crippling mortgage repayments that they struggle to meet each month.  The beautiful smiling family photos mask the fact that their marriage is being held together by a thread.  Make up and a smile can be a beautiful mask for depression, grief, chronic illness or pain.

Let me show you what I mean

I’m going to show you a peek into our lives to highlight that what you see on my social media feed is not always all that it seems.

I took some lovely family photos on a trip to London’s South Bank a couple of years ago. We look like everybody else, minding our own business and enjoying the sights. What those smiley photos of my family don’t show you is that the reason for our day out in London was another road trip to one of the city’s many specialist hospitals. An attempt to make a ‘day of it’ once we had travelled into town.

They don’t let you know about the conversations with my husband deciding if we should hire a wheelchair for the day for my son or if he could manage a few hours out with us without it. You don’t see that my daughter used her wheelchair for most of the day, but hopped out for the photo opportunities with her brothers.

The smiles hide the fact that my daughter is feeling poorly with a sore throat and by the end of the day she said her heart hurts just because she has stood up out of her chair.

You don’t know that the reason we had a few little sit downs along by the river was not the soak up the sights of the South Bank but to pace and rest on the way to our destination. Due to my son coming over unwell and clammy or because I just had to take the weight off my feet for a minute.

It doesn’t show in the photos that the motivational speech by the Lego artist at the start of the exhibition really hit a chord with me. As he talked so eloquently about his inspiration for the exhibition and that everyone is a superhero and can overcome life’s adversities. He could have been talking just to me.

My smile and make up mask the fact that every step I took was excruciating as my knee is finally falling apart and is bone on bone in the joint as I walk. And by the time we had looked around the exhibition the toes on one of my feet literally felt like they were on fire and cramping all at the same time.

The photos don’t show you that when we stopped for food the first thing that we ordered was tap water so three of could top up on our pain meds.

They do not show you that the next morning my daughter was on the sofa under a blanket with HR monitor on her finger and it kept jumping to the high 140’s as she was still feeling poorly and her autonomic system was just out of whack. Or that our son did not really surface for a few days as the inevitable pay off for our day pursued.

You see this is the reality of living with a chronic illness that social media rarely shows. I love the fact that we can share in life’s triumphs, that I can read positive things on people news feeds, smiling children, happy couples. Lord knows we need to celebrate those things more than most but we need to remember that an afternoon out doesn’t mean that we are cured, that we aren’t tired or hurting or going to pay terribly for it later.

A smiling face, great lighting, a photo filter, just like a shiny new car often masks the truth and that is never more true than in the world of social media. It is important not to feel threatened by or envious of the false reality that we see everyday.

Comparing yourself to others

We typically compare the worst we know of ourselves to the best we presume about others. We are all too unique to typically compare ourselves fairly to another. Other than never really knowing the full picture about someone else life, you must remember that you are unique, your talents, successes and value in this world are unique solely to you. How can that ever be compared fairly to someone else?

At the end of the day when you waste your time focusing on comparing yourself to someone else you are concentrating on the wrong thing. There is only one life that you have control over at the end of the day and that’s yours.

It is important to remind yourself that no-ones life is as perfect as their social media reels and no one is living an untroublesome life, weather you are close enough to know about it or not.

Finding inspiration and learning from others is wise, humans are amazing and there is so much knowledge that we can acquire from each other, but there is a fine line between this and self comparison. If you find that comparison keeps showing up in your life, a good place to start is notice the effects that this is having on you. Intentionally remove those thoughts from the inside out by reframing them in to the positive.

Work on comparing yourself with yourself. Spend your time and energy on being the very best version of you. Commit to looking after yourself physically, emotionally and to grow a little more each day. Learn to celebrate your wins without comparing them to someone’s shiny life on the internet.

Remember, no ones life is as perfect as their social media feed.

You may also like LESSONS I’VE LEARNT TO HELP ME LIVE WITH MY CHRONIC ILLNESS  or HOW TO SET GOALS WHEN YOU HAVE A CHRONIC ILLNESS 

Want to start with looking after yourself, but are not sure where to start? Join The Thrive Tribe on Facebook and download your free copy of my ULTIMATE GUIDE TO SELF CARE and HANDY CHECKLIST, details below.

girl pretending to be superman her wheelchair is out of shot. Social media does not show everything!
mum and daughter smiling and having a cuddle. Social media does not show the full picture, that they have just dosed up on pain meds
girl taking popcorn from a lego joker, what social media doesn't show is that her wheelchair is just out of shot.

Join The Community

The Thrive Tribe is a community of women who have chronic illness or are a parent to a child who has an illness or disability.

You may feel like no-one understands what its like living with your chronic illness or worrying everyday about your kids. That you are hanging on by a thread or the future may feel a little uncertain. In The Thrive 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. Or, to support your children to live theirs.

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!

When you join the Tribe you can find your ULTIMATE GUIDE TO SELF-CARE and HANDY SELF-CARE CHECKLIST available in the files to download.

A 10 minute guide to understanding that self care is far more than having a bubble bath and lighting a scented candle. Why it is important to plan for if you have a chronic illness or are caring for someone who does and, a handy checklist to get you started with great self-care practices to support yous physical and mental health and that fit who you are!

 

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