Annie Segarra (@annieelainey on Twitter) created #ThisIsMyEDS to show the wide variety of experiences of those with EDS. She intended it to be a series of videos, but as I detest the sound of my own voice, I’ve opted for a blog post instead. The questions are Annie’s, the answers mine. The series is intended to raise awareness during Ehlers Danlos Awareness Month (May). It’s now 11pm on May 31st, so I think I’ve just about made the deadline!
PART 1: WHAT IS EDS IS LIKE ON MY BODY #ThisIsMyEDS
Introduce yourself: name, pronoun(s), and EDS type.
My name is Melissa and my pronouns are ‘they/them’.
I was diagnosed with Hypermobility Ehlers Danlos Syndrome.
First things, first, in one word, how are you feeling today?
For those who don’t know, can you explain EDS [medically] in a sentence?
EDS is a connective tissue disorder that effects any part of your body contains connective tissue, which is most of it.
What’s your favorite analogy for how EDS feels? Or what EDS is like?
It’s like a building made with faulty concrete. Unstable.
What are your symptoms and comorbid illnesses/conditions
Chronic Pain, Joint Pain, Muscle Pain, Hypermobility, Lax and fragile joints, Frequent subluxations, Easily Bruising, Chronic Fatigue, Chronic Migranes, possible POTS, Dysautonomia, Gastroparesis, Anxiety, Depression, Lower Vision, Cardiovascular Issues, Cognitive Impairments: Difficulty concentrating, poor memory, Irregular body temperature, Limited ability to walk, Limited ability in upper body, Physical disabilities, Dysmenorrhea, TMJ disorder, hiatus hernia, lack of appetite, gastritis, Peripheral Neuropathy.
How does EDS impact your daily life?
It limits what I can do, where I can go, how much I can socialise.
How often are you in the hospital?
Only when I need various tests e.g. MRI, endoscopy, laporoscopy, echocardiogram etc. So, a few times a year. And I spend a lot of time visiting consultants as EDS effects so many different parts of my body. For example, I have seen cardiologists, neurologists, gastrointestinal specialists,
What physical disabilities impact your daily life?
My unstable ankles and weak joints make walking difficult and often painful. I get dizzy quite a lot and sometimes faint. My peripheral neuropathy has recently started to effect my fingers so I fumble a lot. My fingers get sore if I write or type too much.
Devices you use for your survival?
I don’t really use too many devices. I type as much as I can e.g. for writing notes, as handwriting is difficult. I use a cane from time to time. I probably should use it more. I use a shopping bag with wheels as I cannot carry heavy items. I’m considering getting a shower stool.
Do you work?
No, I haven’t worked since my son was born, so over ten years. I’m not sure I’ll ever be able to work again.
Are you often on bed rest?
Not officially. But I do spend an awful lot of time in bed. I am often weak and tired and get dizzy if I get up.
How does it impact you emotionally, your mental health?
I have a huge amount of anxiety when it comes to leaving the house or socialising. I need to know that I can come home again quickly if I need to rest. I am very isolated and have no friends in my area. Obviously this can make me depressed at times. Also, dealing with the medical profession can leave me anxious and depressed as well.
PART 2: Diagnosis with Ehlers-Danlos Syndrome #ThisIsMyEDS
How long did diagnosis/self-diagnosis take? When and how were you ultimately diagnosed?
I’ve always been in pain and had low energy levels. When I was first pregnant, at age thirty, things got much worse. My obstetrician said it was a normal part of being pregnant. When my second child was two, so age 33, I realised I couldn’t blame my symptoms on pregnancy anymore. After about a year I was diagnosed with fibromyalgia. But I didn’t feel that was right, as it was mainly my joints that were effected plus mostly my left side, while fibromyalgia is usually bilateral in presentation. When my son needed help from an occupational therapist, she explained about how Hypermobility was effecting him. I had no idea what that meant so googled Hypermobility and that let to Hypermobility Syndrome and EDS. I finally found a rheumatologist who knew about it and he diagnosed my son, and then me, in about ten minutes. He was aged seven, and I was thirty seven.
What was your emotional reaction when you were diagnosed or self-diagnosed? And now?
Relief. Also, if I’m honest, a certain smug satisfaction that my self-diagnosis was correct. Now I’m weary and angry as there is such little support.
When did you first start experiencing symptoms? When did you acknowledge them as symptoms?
Pain, fatigue, appetite problems: since childhood.
Other symptoms seem to crop up every few years.
Was there a specific age where your health drastically changed? If so, when was that?
When I was 23 I started to get extreme exhaustion. At age 30, the extreme pain started. And about two years ago, my stomach issues and heart issues and dysautonomia got much worse.
What medicines, treatments, and/or devices do you typically need?
I take two different antihistamines, Zantac and Zyrtec. I take a stool softener, Movicol. I take a nutritional supplement, Fortisip. Today I started taking magnesium citrate as my doctor thinks it might help with multiple issues. I have tried numerous painkillers but none have worked. I do use various gels and heat packs and ice packs. I have a TENS machine but the pads don’t stick well.
How often do you go to the hospital? How comfortable are you in medical environments?
I don’t go too often, only outpatient procedures. I have a lot of anxiety in medical environments. If anything, it’s getting worse each year.
What kind of resources and support do you use? (are doctors helpful, support groups, personal research, trial and error)
My GP is very supportive. My gastrointestinal specialist is too. I think it helps that they both have other patients with EDS. I used to be part of various Irish EDS support groups, via Facebook. I use Facebook less these days so my support comes mainly from others with EDS that I found on Twitter. I like to read research into EDS and have various book I’ve bought as well.
PART 3: Letters from an EDSer #ThisIsMyEDS
What’s something you wish your friends/family knew? “To or Dear friends/family”
To those of you who have EDS as well, I’m glad I was able to help get you diagnosed. Before I started investigating my issues, none of us had heard of EDS. We didn’t even realise we were double jointed, though my brother’s party tricks used to amuse us. We certain,y didn’t think our separate issues were actually linked. I’m sorry you share my genetics, but I’m also glad as we get to compare symptoms and treatment and support each other, and listen to each other whinge.
To those of you who don’t have EDS, please be patient with us. I know you think we complain a lot. You may think we can’t really suffer as much as we do. But please trust us. I also know it’s hard to watch loved ones suffer and you are coping as best you can. I wish you had more support too.
I know I dont see a you as often as we’d all like. And it may seem like I’m not making enough of an effort to visit or keep in touch. But even leaving the house for a few minutes is difficult most days. Im glad we can use technology to keep in touch. And when we do get to meet in person, please believe me that it makes me incredibly happy to have you in my life.
What do you wish strangers knew about EDS? “To or Dear Strangers”
Yes, I know I’m often quiet and standoffish. I may come across as rude. But that’s mostly because I’m exhausted and trying to cope with intense amounts of pain. Please do not judge me. And offer me a seat.
What would you like to say to the doctors that caused you harm? “To or Dear Harmful Doctors”
To harmful doctors,
Please believe me when I tell you my symptoms. I’m not doing so for attention. You take enough money from me, the least you could do is actually listen. I’m not looking for a quick fix or a miracle cure. But I’d like to be taken seriously and at least a little effort put into problem solving. Let’s work together and see what progress we can make.
What would you like to say to the doctors that have been a great help to you? “To or Dear Helpful Doctors”
Dear helpful doctors,
Thank you. Thank you for listening. Thank you for believing me. Thank you for not giving up on me. Yes, it’s tedious going through all this trial-and-error as so little seems to work. But I appreciate the effort you put in, the extra reading that you do, and the thought you put into seeing what else we can try.
What would you like to say to those seeking diagnosis? “To or Dear those seeking diagnosis”
Dear those seeking diagnosis. Don’t give up. It’s a long and confusing road, especially with the new diagnostic criteria. But there are lots of us who have been down it and can guide you. I hope you get your diagnosis and that your life improves and you get more support. We are all in this together and if you ever need help or advice, we are here for you.
What would you like to say to someone who was recently diagnosed? “To or Dear those recently diagnosed”
Dear those recently diagnosed. Welcome to the herd! I hope you are feeling re,keg at finally having a name for what has been troubling you. There may not be much official support or treatment, but please know your fellow EDSers will be here for you. Try and take it easy, no need to rush into figuring out what it all means to you. You’ll do that eventually.