EJ: You’re obviously a very bright and beautiful woman, but dealing with such a debilitating illness still has to demand an enormous amount from you. How do you cope? What advice would you give to other young women to cope if they were disabled by EDS, fibromyalgia, ME, etc.?
Mandy Morbid: This is also a subject I feel like I have an awful lot to say about. To simplify, for now, I’ll make a list:
Let yourself grieve at times. It’s normal given what you are going through. It’s the appropriate and healthy emotional response at times. You can’t be positive and determined all the time nonstop. The same goes for anger. You will need to vent.
At the same time, try to be mindful of the people you love and who love you – your caretakers. It’s hard on them too, so learning how to express your grief and accept theirs as well can be useful. You can go to therapy to help with this. I did. I did a year of one on one cognitive behavior therapy during the somewhat traumatic aftermath of my first surgery for my endometriosis.
Find a support group of other people you feel like you can relate to, peers, whether it’s a group you meet in person when you are able or a Facebook group, or email, it helps. My support group is mostly on Instagram’s direct (private) photo sharing app and also Twitter, apps like Kik and via text messages. I was very open about my situation and over time I made friends with other young people all over the world with EDS who are generally as severely affected as I am. We now have a close group of friends who try to keep in touch daily. We learn from each other, share resources and info about doctors and treatments, vent and offer emotional support. I am also lucky enough to have a few friends in real life who also have the same syndrome. One girl I was friends with before either of us were diagnosed!
Take advantage of your hospital or city’s social services. Don’t be afraid to ask for help when you need it. They will try to help you obtain equipment or teach you adaptations you need. The same goes for fundraising. Your quality of life has value regardless of how it feels to live with these illnesses and disabilities sometimes.
Find hobbies you can still participate in as your physical abilities change. I can’t play video games as much as I’d like but I will watch Twitch or play tabletop RPGs. I can’t read as much as I used to be able to but I can still listen to audio books or ask my friends to read aloud to me. I may not be able to go hiking with my friends but we can still go to the park or an accessible beach. I may not be able to go out as often as I’d like but I make sure my friends know I am always, always up for movie night at my place or whatever… at my place.
You are going to have to explain to your friends and family – educate, educate, educate. Some will feel overwhelmed. Some will ask you how you are doing and when you are honest with them they will be angry and upset. But they will learn why you can’t do certain things anymore or why you have to cancel plans last minute, and then you won’t have to talk about it much anymore. There will be some who will never learn and you might have to let them go. There will be some who can’t cope and will never try to make plans with you again. But you will value the ones who stick with you even more.
It’s OK to ask for help or tell someone you can’t do something. This is a hard one. Keep working on it. I still am. It’s likewise OK to say no when someone is asking too much of you.
If you’re in a romantic relationship you are going to have to be very understanding of your partner’s needs, as s/he will need to be of yours. Sex and intimacy might change. You might have to adopt new practices and arrangements. I am always the one who instigates sex. My boyfriend isn’t psychic and he cannot always tell without me saying so explicitly if I am well enough or not. You might have different issues to address but it’s going to come up. And keep in mind there are things like special pillows and positional supports you can buy, wedges, chairs, swings that can help get around physical limitations. So educate yourself! The internet is great for people with disabilities. Don’t give up. Your quality of life is worth fighting for.
You are going to have to learn to find a balance (trial and error, and research and planning ahead) between accommodating your disability/illness and maintaining the lifestyle you value. Whether it’s your education, your career, your relationships, at bit of all of those things, you will have to compromise, and you will have to prioritize. It isn’t easy. I have had to give up both performing and university. For now.
Remember you are not alone. I know it is isolating – but we develop strengths others do not, we have resources and insight and compassion others don’t.
Find ways to keep occupied and calm during the worst times of severe pain and illness, those times you cannot do anything else. I have my little quiet lap dog, a white noise machine, visualization techniques, chocolate if I am able to eat, soothing and pretty lighting, oils to help me breathe (peppermint and eucalyptus), certain books or music I only listen to when I need to retreat, sleep masks and headphones and binaural beats to help with sensory over stimulation. There are all sorts of things. Certain stuffed animals, a room painted in certain colors. Someone you can call just to hear their voice – these little things have helped me in the long run preserve my energy, my sanity, through the worst times.
As much as everyone says “fight fight fight,” you might need to take breaks from doctors appointments, tests, hospital errands, etc. I need two week breaks every few months at least. No doctors, no lab tests, no going anywhere near the hospital (unless there’s an emergency).
Read the whole interview for lots of information on Ehlers Danlos. Mandy’s a great advocate.
Reblogging this story about #EhlersDanlos I told a few years ago for #RareDiseaseDay
Ten years ago today, I sat in a small windowless office while a doctor told me that I had something called Ehlers-Danlos Syndrome and I’d probably be dead within five years.
I had no clue what it was or what he’d said. I was so overwhelmed that a friend did the initial researching and sent me links. At the time, there was very little information online. The EDNF had an impenetrable web page, there was no NYC support group, and I was only able to find a few people with livejournals. So I signed up for LJ and started connecting.
It’s so different now, you guys. I’ve met so many Ehlers Danlos patients now that I can pick ‘em out by sight. Twitter, Tumblr, MF’in LJ - We’re EVERYWHERE. We’ve got forums and multiple foundations. It’s kind of awesome. I learn so much every day.
I remember reading that most doctors would be lucky to see one patient with EDS during their entire practice. I’ve been mistreated by more doctors than those who’ve helped. It’s been a good learning experience, but I’m glad it’s getting better. We’re still not there, not by a long shot, but it’s a little better.
May is Ehlers-Danlos Awareness month, which meant fuck-all to me when I started hearing about it, around 2006. It was a stressor on the local groups to try and earn money and gain some local media support for the national foundation. I don’t feel that way about it anymore. When I tell people about EDS and the way it affects my life on a daily basis,my life gets better. It helps other people get diagnosed and treated. When I recommend doctors who have been helpful, they see more EDS patients and end up treating me more effectively. The people around me gain a slightly better understanding of my limitations and prioritize accessibility.
It’s better now than it was 10 years ago, but there’s still a long way to go.
If you want to know more about Ehlers-Danlos Syndrome, start here:
Foundations & Support: EDNF Ehlers Danlos Network Cares EDSNYC 2.0**The people in the NYC group made me feel like I was going to get through this. I cannot stress enough how much in-person support has helped.
If you’re down with reblogging for awareness, go for it. I’ll post other EDS things today and this month, too. Thanks for reading.
Full gear. #ehlersdanlos #ringsplints #silverringsplints
Does anyone know where you can get ring splints???
The joints in my fingers are so weak and floppy that it’s easy to partially dislocate them without really trying, even with doing physio to try and stabilise my range of motion and mobility. Trying out some kind of ring splint really might be a good idea for me, especially on bad days, or months, like this one has been.
Help a spoonie sister out?
I saw a tumblr post a while back advertising this website: http://www.silverringsplint.com/
They’re expensive but supposedly very good.
I got my ring splints by getting a prescription from my rheumatologist, then going to a hand therapist who knew how to both fit me for them properly and also bill my insurance. The splints pictured above were then ordered through silverringsplint.com, who were also great about returning a set of splints that didn’t fit once they arrived. I had to go to a jewelry store and get the wrist chain on my thumb splint cut down to size, which was free. I was extremely lucky, in that my insurance covered them. Part of this was definitely working with someone who knew how to bill them correctly. Insurance companies are pains in the arse.
EDSRINGSPLINTS on Etsy is a great place to get a set of splints, too. You don’t need a prescription to order from them. They recently ran a promotion for rare disease day. Check it out here: https://www.etsy.com/listing/174729672/get-your-rare-disease-day-splint?ref=shop_home_feat_4
If you want to try out splints without the commitment, plastic ones are available on Amazon. Here’s an example: http://www.amazon.com/Oval-Splints-Individual-Ring-Size/dp/B000ITFYV8/
Eds pain scale
So, as you’ve heard me bang on about, I’ve got this thing called Ehlers Danlos Syndrome, and it’s kicking the crap out of me. Pain, constant, often very severe. Fatigue, also constant, also often very severe.
Here are some common misperceptions.
1) With treatment, I’ll “get better”.
So I have a question for my lovelies out there with chronic illnesses (particularly eds). Do you guys use special computer mice? Or keyboards? Because my fingers have been pretty bad lately and I think it’s from being on the computer…
curious about if anyone has answers to this so signal boost…
My hands are messed up, too. I use a full set of ring splints, wrist braces and dragon dictation to get around it.