I thought about this post all last night and was adamant I was going to write it but now it comes down to it I’m not so sure. My resolve is wavering. Do I bare my soul or do I continue to hide behind my keyboard just posting book reviews, the occasional YouTube video and something that passes as personal?
The reason I decided to write this post last night was because I wanted to talk about disability and in the talking, raise awareness. I wanted to raise awareness of a little known genetic disorder. I wanted to do my small part with my small platform to give it a small voice. I decided that it was OK for me to be open on my social networks now about how I live and how this really, genuinely effects me. That my readers would be OK with that.
But today my resolve is wavering. Will I be looked at differently through the screens of readers? Do people want light fluffy clouds in their streams or some honesty and reality from time to time?
My reality at this moment is far from light and fluffy. It’s probably what kept me away from my keyboard so long this morning, I didn’t want to bring this here, but here I am now. Typing.
Hypermobile Ehlers Danlos Syndrome effects every person who has it differently. The connective tissue of every person is made faultily by the body and the effects of that vary widely. Many in the medical profession know little about it. My own GP said to me he would have to go and read up on it so he could care for me better. I was pleased with that.
Right now I’m really struggling. I’m deteriorating. I feel as though I’m getting locked down in a body I don’t want to be inside of. My brain still works. My mind is still the same one it was a few years ago. The one that wanted to learn to rock climb so I could go and climb some massive rocks in America. My mind still wants to jump out of a plane again. My mind wanted to do the skiing challenge in the pool on holiday this year. My mind wants to go out drinking in an evening with friends. My mind wants to walk the dog on some massive long walks. My mind wants to plug earphones in my ears, turn up the music and learn to run and steadily go further. My mind wants my body to have some energy.
My body just says no.
You read my posts on attending the crime writing festival at Harrogate this year. What those posts didn’t say was that I failed to attend any evening events. In fact I failed to attend anything past 6pm. They failed to say I had a postural orthostatic tachycardia attack in front of friends in the hotel lobby on the Saturday. That I was laid down on a hotel sofa in that lobby and a fan brought for me before I could be moved to my room. My friends were wonderful and I am grateful to them.
BUT, I did get up every morning and get dressed and enjoyed the daytime activities that weekend.
I’m struggling right now. My neck is highly hypermobile. On MRI it’s shown that its range in flexion and extension and turning left and right go way beyond what a person without hypermobility can. It is causing me a lot of pain and it’s constant. This is causing me the most problems right now. There are ongoing investigations but out of all the joints in the body, the neck/head joint is probably the least known and acknowledged in this country, particularly when it comes to its laxity due to EDS, so expensive specialists have to be sought out and even specialists in the US. It’s draining my energy and my ability for happiness. It’s like a life and soul sucking black hole at the base of my head.
Disability isn’t fun, but neither is it something I should be ashamed of and have it hidden away in a box. I’ve put it out there now. I’ll keep you updated randomly. I see a specialist in London in the middle of November. I’m hoping he will help and support me in getting further answers and help. But now, I’m stuck inside here screaming ‘Let me out!’
I for one am glad that you did decide to post Rebecca. It must be so frustrating that there are so few answers about your condition which until a few years ago I had never heard of. If ever you need an ear please don’t hesitate. There are invisible misunderstood illnesses in my immediate family so understand to some degree what it must be like. Hope you get better news in November xx
Thank you Steph. That’s so very kind of you. Invisible misunderstood illnesses can be impactive can’t they. You don’t just have to fight your own body but other things as well. Your generosity is so thoughtful. Xx
Hope you get some helpful news soon Rebecca.
Thanks Carol. It’s been a long journey this particular one.
Hope your specialist will be able to help you. Will be wanting to hear how it goes. Fingers crossed. Xxx
Thank you. Fingers crossed it’s good news I can post.
Rebecca – Thank you for sharing your experiences. We all know in the abstract that there are people – real people – behind the posts we read. And it’s good to know them better. I can’t tell you how much I admire your resolve to make a good life for yourself despite having to adjust it all the time. A lot of people don’t know what it’s like to live with a disability, especially one we don’t know much about. Your willingness to share about it helps us understand better. It also helps others with disability feel more comfortable too. They’re not alone. And it brings all of us closer. You’re an inspiration.
Thank you Margot. I hope these posts do help people understand the realities of living with disability and not necessarily always the difficulties they bring, but I hope I will be able to post positive posts in the future as I grow and adapt.
I’ve really only known you for a short time, but what I see is an incredibly brave and resourceful lady in the face of this terrible adversity. I can only imagine what you must go through day to day but you do it with such grace and integrity that I look on in awe and wonder whether I would be the same way if I were to experience half the difficulties you do. This is a wonderfully honest and sincere post and I’m glad you wrote it. Even for the people who know about your condition it can be easy to forget what that actually means. I hope the specialist can offer you what you seek. x
Thank you Sharon. I can promise you not every day is graceful. There can be days with lots of whining đŸ˜‰ But I think you have to keep trying.. We have only the one life and we have to try and learn to live with what we have, whatever that may be. Thank you for your support xx
Rebecca, you were very brave to post this seeing as how difficult it can be to write about one’s personal life. I didn’t know the existence of H-EDS till I read about it on your blog earlier and, of course, in some detail now. Your post will, no doubt, help spread awareness about this condition. On another note, in times of crisis I promptly turn to the mystics and their spiritual wisdom, which, backed by heartfelt prayer, gives me mental solace and physical strength. I have made a permanent mental note of the beautiful hymn “Footprints in the Sand,” visualising it as I apply it to myself whenever I have felt the need. It has never failed. I hope this will in a small way help alleviate your pain and regain your energy. I sincerely hope your specialist will have both answer and remedy that works for you.
Thank you Prashant. I agree that “Footprints in the Sand” is beautiful and can see how it would be helpful in times when it’s needed. A couple of friends have spoken to me about the power of meditation and I am going to try that and see if this can centre me a little more.
Thank you for posting this, Rebecca. I understand it is difficult to share your struggles with the world , but we are enriched by the telling. I’m glad you went to the crime writing festival and didn’t let your EDS keep you from doing the things you love. You are in my thoughts. I hope today is a good day where you feel well enough to sit at your keyboard and do what you love.
Thank you Elizabeth. It was a difficult decision writing this post and I have been so pleasantly surprised by the support I have received from it. I try not to let it stop me completely but I do have to pace myself and make extra allowances for things. Thank you for your kind words.
You are very brave to post this, and I for one am really grateful and pleased that you do. People do need to hear about disability and its many different manifestations, so that they are not so quick to judge or be blind. I am really sorry to hear that you are having such a rough time. As always with a little-known disease, it is hard to get a reliable long-term treatment, so I wish you luck and plenty of good advice and good doctors.
Oddly enough, I was just talking about you at the weekend. I remembered when you said that people in the literary world had advised you not to talk about your illness to publishers – and this was an American-Swiss writer who is probably in her 60s and so the English-speaking publishers didn’t want anything to do with her because she was too old (she had already published about 12 books in French, but that didn’t count). It’s sad, isn’t it, that age, health and looks should matter in the world where only the words themselves should matter?
Thank you for your kind words Marina. Your support is appreciated.
I can not believe a writer is being penalised because of her age and you’re so right that it absolutely should be the words that count. And a woman in her 60’s is considered young in today’s society surely!
I only heard about this condition when you mentioned it, at some point in the past. Since then, I’ve seen it mentioned elsewhere – and have at least a vague idea of what it’s all about. It must be difficult dealing with a condition that the medical profession know so little about, but hopefully you’ll get some help/answers in November. Even though you can’t do everything you want to, you’re still doing as much as you can – you’re not giving up. And at the end of the day, that’s all any of us can do. Take care, and I’m glad you posted, too.
Thank you Annalisa. It is funny that, you’re not the first person to say having heard about it once, you’ve then heard of it again. I’m glad people are aware. The thing is that very often when we go out we get showered, wash and dry our hair, put the makeup on and look fine. Our bodies however are working overtime to keep us upright and going. Fingers crossed for November đŸ™‚
As writers it’s our job to make people think differently from the norm, and examine life at an alternate angle; it seems to me that you penning a blog post about your condition is another extention of that. A most worthy post.
Thank you Cath. I hadn’t thought about it like that and I like the way you have commented and made me look at it a little differently. And that’s me! Thank you x
Rebecca, This was very courageous of you. You are so right. You shouldn’t be ashamed of your disability. It’s not as if you went out looking for it. Your transparency and honesty makes more people aware of a little known disability and I’m certain that it will help others to talk about their disabilities whether similar to yours or not. Thank you for sharing such a personal part of who you are.
Thank you Carol. I do hope that it does show people with disabilities are the same people as people without disabilities really, as in we don’t need to be sidelined or for people to be afraid of us. Thank you for your kind words.x
You’ve been very brave and honest, Rebecca. I admire you for that. Living with a chronic health condition is never easy and I’m sorry you’re so ill. I hope putting your story out there helps you as much as I’m sure it’ll help others in similar situations. It will certainly help to reduce the loneliness that can be felt by sufferers of all kinds of long-term ailments. I also hope the consultation in London has positive outcomes.
I wish you good days amongst the bleak ones and I wish you well in all senses of the word.
Thank you Anne. It wasn’t an easy post to write as you can see, but the support has been tremendous. I really appreciate your kind thoughts. It does help and I hope it helps those that hide their disabilities and shows that they can speak about them.
I’m so glad you posted this. We are used to many people posting only the shiny, fun parts of their lives on social media and blogs, but posts like these help us to get a clearer picture of the day to day struggles people really face.
The rupture between the life your mind wants you to live and the one your body is capable of is awful, but I’m glad to hear that you are still doing as much as you can when you can.
Wishing you courage and better health soon, and thanks for posting. x
Thank you Claire. It was, as you can see, a very difficult post to write, but the support and understanding has just quite simply stunned me. I didn’t expect this at all. Thank you for your kindness.
Rebecca, I’m sorry! I hope that specialist can bring some ease to your pain.
Don’t be afraid to tell the world. Tell the world about this disease and let us know when you are struggling.
Alex, you always pop by and I’m so erratic. Thank you for your continued support and your kind words today x
I agree with the comments above in that you are quite right to share this post. It gives people a better understanding of the challenges you face to achieve in your life. You have already written one novel and are working on the second while battling this dreadful disease. You also have a family to care for and a puppy to rear. And, you are a very special friend to so many of us. That in itself will give others encouragement that they can achieve in their own endeavours too.
I’m sorry that you are feeling so bad at the moment. It must be absolutely horrible to feel your body let you down when you mind is willing. Fingers crossed that the medical people can find something that eases the condition in the long term and, in the meantime, you find some windows in the pain and fatigue that allow you to live and enjoy life. Take care, my friend. Jx
Thank you for your kindness and friendship Jane. It means a lot to me xx
Sorry to hear things are so tough at the moment, Rebecca. I hope that the specialist will be able to help.
Thank you. I’m keeping my fingers tightly crossed đŸ™‚ x
Hi Rebecca,
My 13 and 9 year old daughters may have EDS, which I found out about a month ago. (Gorlins Sign, presyncope on standing, hypermobility, etc) My ex partner is determined that there is nothing wrong with them, and it looks like I will have to go to court just to get them diagnosed. Although my ex suffers from all the signs of POTS and EDS, (Rapid delivery, joint subluxation, etc) she refuses to cooperate. She suffered from acadermic collapse at 15, and I am worried that my eldest daughter will also suffer this, or worse. How could someone not allow diagnosis just because its genetic?
Hi Peter,
I think fear often prevents people from pursuing a diagnosis of anything and what that could mean. A diagnosis doesn’t always bring you everything you want with this disorder either. A specialist may diagnose it, they may not if they don’t know enough, but even if one is made, the care afterwards is hit and miss. You just need to talk to the people with the disorder to know that. And like I said, people are affected by it in so many different ways. Some to extremes and some are really low on the scale. Figure out what it is in you want out of a diagnosis and maybe try and talk to a group of people who live with it. http://www.ednf.org/ have a lot of information and a group forum which is mostly US based.
I hope your children are ok.
I’m so glad you found the courage to post!
Thank you Laura đŸ™‚
Rebecca, you are my hero!! Sharing your condition, with all of its pain and emotion, is brave and compassionate. Having my own type of disability made a believer out of me. You never think it will happen to you and when it does you want to tell non-disabled people to take nothing in life for granted. I hope the London specialist will be able to give you answers and hope. We’re cheering you on.
Thank you so much Nancy! What a wonderful comment to read. I know what you mean about wanting everyone not to take life for granted. I try and tell my eldest to just live her life, do what she wants to do, just go live! (I haven’t passed it down to her).
Thank you for your understanding – and I’m sorry you understand it so well. You have my ear if you ever need it. – and cheering, I’ll let you know how London goes. đŸ™‚
Sorry to hear how much you are struggling right now – hope you get some news in November, but that probably seems like an age away… you’re right to post this and make people aware. People get sucked up inside their own lives, and everyone has to deal with things that they can’t share – but sometimes sharing is exactly what you need to do. You are such a supportive person, Rebecca, and I’m glad that you have the support back for you, when you need it most. xxx
Thank you Susi. As you can see it was a tough decision about posting, but the support has been incredible. I’ve been overwhelmed really. Thank you xxx
Thank you for sharing something so personal with us all Rebecca. Disability (or illness) should not be something to be ashamed of. I sincerely hope that you get some answers that will support you in November, I can’t imagine how frightening, frustrating and unfair this may seem at times. Take care x
Thank you Cleo. It was a hard post to write and to press the publish button on, but the support has been overwhelming to be honest. It has also given me a much needed boost. Thank you for your kindness xx
Thanks for sharing Rebecca. I look forward to reading more of your writing and reading about your progress. Good luck! đŸ™‚
Thank you! đŸ™‚
Keep sharing whatever you want, Rebecca. It’s your blog. Write whatever you want and your friends will be here, reading and praying for you.
Thank you so much. That means a lot to me.
Yikes. That’s a life changer–I’m so sorry to read all this. Know this though: If your brain still functions, you adapt to your body’s failure. You’ll be fine. My rheumatoid arthritis and ankylosing spondilitis were a massive hit to me 20+ years ago. Once I could mentally accept a good solution was to alter my life style–and that was OK–I fared much better. I look forward to reading as much as you’re willing to share about how you adapt, accept, get better. Thanks for being so open.
Rebecca, that sucks! đŸ™‚ I’m sorry to hear that your disability is making life difficult for you. I am glad that you are sharing your journey and what you are going through. You are very inspiring and the more you talk about what’s going on, the more awareness you create and to be honest the more the rest of us can really put our lives in perspective. Thank you.
Thank you for your kind words Maggie. Your kindness has actually helped to lift my spirits a little. Thank you!
You are one very brave soul, Rebecca. I’m so glad you wrote this post because it really raises awareness this awful disease. Stay strong my friend XXXXX
Thank you Dianne. Your support means a lot to me. I am overwhelmed by the support. Thank you! xxx
Beautiful post Rebecca and one that needs to be read and shared!
It is never easy living with an invisible illness. It is even less easy talking about it. Well done on having the courage to show your vulnerabilities. That demonstrates true strength!
Thanks for allowing us a glimpse into your daily reality. đŸ™‚
– Kim (fellow writer with an invisible illness)
Thank you Kim, for your kind words and support. It was, as you can see, a difficult post to write and then publish, but I did it and I am overwhelmed by the support.
I’m sorry you are also living with an invisible illness. I always have an ear should you need it.
Well here’s another credit to you. I had written up a post about my own struggles with my invisible illness and was going to only post it to my private blog. Then you posted yours and it gave me the added little push of courage I needed to post my post on my public blog. So Thank You for posting yours because I felt I could post mine then.
Thank you for your offer of an ear. The same goes for you! Anytime! đŸ™‚
I’ve just read your blog Kim. An amazing piece! Well done to you for breaking through that wall of shame. x
I remember you mentioned this once before but I definitely didn’t realize how severe it was and what an impact it has on your life. I’m so sorry you are having such a difficult time and I hope the specialist will be able to help you get some relief so that your body can do what your mind so wants to do. I give you tons of credit for being so open and I am sending all good thoughts your way. Take care.
Thank you Julie. I don’t think it was as severe before as it is now. It is definitely deteriorating and that worries me, about how far it will go, but I need to adjust my mindset to match it and that’s the key.
Really sorry to hear you’re going through a rough patch. As you know I greatly admire the way you write about your health conditions, and your posts always resonate with me deeply. I find it so hard to know how much is too personal, but at the same time its such a big part of our lives and who we are, that not writing about it means its not our real selves either. Thank you for sharing this. Hope your appointment in November helps. Is it Queens Square by any chance. Look after yourself, thinking of you xx
Thank you Kate. It is a balancing act in what to share and this was a difficult post to write, but it really is a part of me and not mentioning it seemed to be denying who I am. It’s not Queens Square, though I have just looked it up. It’s a specialist EDS doctor initially who will then hopefully be able to send my MRI scans to the right person for reading.
How are you doing at the minute?
Thank you for posting this Rebecca. When I read your post just now, I felt my heart crack open. Much of what you write – although highly personal – can also apply to so many people with other disabilities and even to people who are simply undergoing the process of ageing – the mind flies (well we hope it does when we age) while the body just cannot. Having a chronic disability at a younger age that deteriorates in time is a cruel affliction that can sap self confidence. It is definitely not something to hide or be ashamed of and I applaud you for telling it like it is. Thoughts and love are with you from the heart xx
Thank you so much Alison. It was a difficult post to write, but hiding myself away just didn’t feel very genuine anymore, especially as my long weekend at Harrogate had proved to me just had bad things had got. Support like yours means a lot. Thank you xx
I missed this on the 8th but saw the link on Facebook this morning so came here to read your post, which was a brave thing for you to do, and showed me that my own excuses for not doing things are woefully inadequate!
When we met, I saw you as a very attractive, intelligent woman with a talent for writing, a great sense of humour, a great smile, a love of fun and a total lack of self-pity. I had no idea what you are dealing with until you had told me. I hope you continue to get the treatment you need. Love Anita
Thank you for your very kind words Anita! Posting about my issues at times on my blog is something I will do, but the illness itself will still be invisible when people see me. (Well mostly!) Getting my head around the effects and restrictions is something I am working on and adjusting to that will hopefully keep me the same person I have always been. Thank you Anita xxx
Rebecca – that is a brave and honest piece of writing. Never be ashamed of who or what you are. We are all made up of different things, and no matter how our bodies can let us down, we are defined by our minds, our brain, our sense of humour, our talents. Late last year, I wrote a similar post on my blog. Sometimes you just need to get those words out.
Keep on doing what you do so well
With love, Anne x
Thank you Anne. It was a difficult decision to write it and even harder to then write the piece. The kindness and support on here has shown me I didn’t need to be so fearful.
I’m sorry that you know this feeling so well and I wish you many good days xx
I’m really glad you were able to write this Rebecca, it’s a very honest post and you are a brave person. I’ve just seen the link on my facebook feed and come over to read it. Take care and keep thinking as positively as you can. I know about some invisible illnesses that can be very difficult to deal with and to know what or how much to share with others. Lindsay x
Thank you Lindsay. It was a difficult post to write and share but the support and comments have shown me that I didn’t need to be afraid. Thank you for that. x