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.
Anonymous asked: What are the signs of emotional abuse?
Abusive Expectations - Makes impossible demands, requires constant attention, and constantly criticizes.
Aggressing - Name calling, accusing, blames, threatens or gives orders, and often disguised as a judgmental “I know best” or “helping” attitude.
Constant Chaos - Deliberately starts arguments with you or others. May treat you well in front of others, but changes when you’re alone.
Rejecting - Refusing to acknowledge a person’s value, worth or presence. Communicating that he or she is useless or inferior or devaluing his or her thoughts and feelings.
Denying - Denies personal needs (especially when need is greatest) with the intent of causing hurt or as punishment. Uses silent treatment as punishment. Denies certain events happened or things that were said. Denies your perceptions, memory and sanity by disallowing any viewpoints other than their own which causes self-doubt, confusion, and loss of self-esteem.
Degrading - Any behavior that diminishes the identity, worth or dignity of the person such as: name-calling, mocking, teasing, insulting, ridiculing,
Emotional Blackmail - Uses guilt, compassion, or fear to get what he or she wants.
Terrorizing - Inducing intense fear or terror in a person, by threats or coercion.
Invalidation - Attempts to distort your perception of the world by refusing to acknowledge your personal reality. Says that your emotions and perceptions aren’t real and shouldn’t be trusted.
Isolating - Reducing or restricting freedom and normal contact with others.
Corrupting - Convincing a person to accept and engage in illegal activities.
Exploiting - Using a person for advantage or profit.
Minimizing - A less extreme form of denial that trivializes something you’ve expressed as unimportant or inconsequential.
Unpredictable Responses - Gets angry and upset in a situation that would normally not warrant a response. You walk around on eggshells to avoid any unnecessary drama over innocent comments you make. Drastic mood swings and outbursts.
Gaslighting -A form of psychological abuse involving the manipulation of situations or events that cause a person to be confused or to doubt his perceptions and memories. Gaslighting causes victims to constantly second-guess themselves and wonder if they’re losing their minds.
So I have always been extremely embarrassed that my left ear is deaf. I tried to hide it in every way possible. It made me feel broken and useless, especially listening and playing music. My original idea was to put music notes behind my ear, but for some reason the idea just didn’t feel quite right considering I couldn’t hear said music. I came up with the mute symbol idea because lately I have learned to embrace my deafness. I tend to joke around that my left ear is like my mute button when I want to ignore someone. Now I am no longer ashamed and find strength in the humor of my tattoo.
That is pretty great.
mr-pond-parties-in-the-impala Hope you like this :)