Pain…and that whole “demanding to be felt” thing.

Hello, guys! It has been a very, VERY long time since I have written here. There are many reasons in my life why I haven’t been able to share with you for a while, including that my husband and I moved, got a new dog, and started new jobs. For those of you who know me personally, you probably are not surprised I have taken a break from blogging. For those of you who don’t, I’m sorry for the gap there has been in my writing. Please know I have missed being here, missed the chance to share with you, and missed what working with EDS Wisconsin means. Please know that my work here matters so much to me.

We grew by four paws this fall!

So, what brought me back to share four days before my favorite holiday? Pain. I want to write to you, for you, and truthfully almost WITH you because I am in pain. 

Most of us with EDS spent a long time being told nothing was wrong with us. We were given a laundry list of things that would make us “better.” For many of us, there was a phrase that sounded something like “it’s all in your head.” For me, it was 13 years from the first time my mom begged a doctor to explain what was happening to me until the day a doctor actually did. 

This creates a huge problem for us. We take offense then, later, when someone suggests we might need psychiatric treatment. It makes sense, right? You spent most of your life being told you’re crazy, someone finally tells you that you actually have something wrong with your body, and then they suggest you see a SHRINK? Why on earth would you need psychiatric help if your disease is real? Why would you need someone to “fix your head” if the problem is ACTUALLY in your body. 

Well, I have one, huge, giant newsflash for you:

Having an incurable, genetic condition that causes severe chronic pain and usually comes with other conditions with their own symptoms–that causes psychiatric symptoms in itself. You don’t need psychiatric help because you are imagining your pain. You need psychiatric help because you ARE NOT imagining your pain.

I work with a great psychiatrist. I started working with a new one recently because of some trauma I’ve experienced. I knew I needed more help than I was getting where I was going before, so I asked my doctor for a referral to psychiatry. I will never forget explaining EDS to him the first time I met him, though, and the experience I’d had in my childhood with my pain and the doctors and the whole “it’s in your head” thing.

Of course it’s in your head. That’s where we feel pain. That’s how we feel pain. Without your head, you couldn’t have pain at all.”

I have never, in my life, felt such validation. I think those words are burned in to my brain now. I wish I could go back and hug 13-year old Stephanie against my chest and tell her those words in her ear. I wish I could hug her as she begged her mom to find a doctor who would make the pain stop and not one who would just tell her she’s fat. 

There is no cure for EDS. That doesn’t mean you won’t get “better.” It does mean it will always be a part of your life. For some, like me, that means using a wheelchair when I’m only 27. For some, it means not being able to work outside the home. It may mean co-morbid conditions that making eating, drinking, and just existing in the outside world a challenge. For some, all those years of being told it wasn’t real can cause very, very real psychiatric conditions. That does not negate the very real physical part of the condition. It does mean you need help.

I was recently diagnosed with Post-Traumatic Stress Disorder. I’m not going to write about the incident leading to that diagnosis. It’s not relevant to my blog and I’m still learning to cope with it. What I do want to tell you is this:

-My EDS pain is as well-managed as it can be, but for an EDS patient, it is poorly managed. Because of the nature of my pain, I have not responded well to many treatments and we’ve resorted to wheelchairs and other ways to reduce how much I use my body because there simply has been no other successful means of handling my pain.
-When my stress levels are worse, that pain gets EVEN WORSE than it already is. If I rejected the psychiatric help I need, I can’t even imagine what kind of pain I would be in.
-I also find a lot of value in just having someone to talk to who isn’t in my life every single day about the reality of living with EDS. A psychiatrist, psychologist, school counselor, or any mental health professional can let you talk about everything in your life that’s bothering you without it becoming a self-centered nightmare like it would if you spent an hour with a friend in the same way. 
-I highly recommend signing a disclosure agreement that lets your pain doctor work with your psychiatrist. My experience having these two work together has improved my quality of life. I’m not your doctor–but these people would be. Let them help you.

At the end of the day, my point is this: stop being offended at the suggestion of mental health care after an EDS diagnosis. Nobody is saying you are crazy.  I’ve written about the “mental whiplash” of thinking you are imagining it and then finding out you have EDS before; any person who has experienced that PROBABLY needs help from a mental health provider.

I reject the notion that it makes you weak to need mental health assistance. In fact, the day I called the clinic and said, “I really need help and I need it as soon as you can give it to me” took some of the greatest strength I possess. There is so much strength in acknowledging your weakness. 

Every EDS patient is amazingly strong. Don’t you dare let anyone tell you otherwise–but also, don’t let that strength scare you away from asking for help.

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  1. Jeanne Martens / December 22, 2018

    Stephanie, I hope this message finds you well and Merry Christmas! I’d like to start with congratulations on your new family member! We’ve pretty much always had a dog in our 29 years of marriage but it wasn’t until 3 years ago we got a second dog, 6mo apart in age and both were puppies I thought one amazing dog the best thing ever, little did I know that I was capable of caring for, room in my heart and home for two 80+LB canines (first one is a rescue black lab mix about 6 mo after the death of golden retriever and the second and the second is a English cream golden retriever), and the two couldn’t be more different from each other in their personalities. The unmeasurable amount of Joy they bring to us is amazing, who knew?, and boy were we missing out all those years. But it’s not for everyone, especially physically and financially. Secondly, thank you! For some it’s the first time hearing that it’s ok to see a mental health professional and that you are not any less of a person,or weak. I let my pride get in the way 10years ago when I had a tumor from my throat to my brain removed and the surgeons had automatically had a psychiatrist scheduled to meet with us before I was discharged and I was offended. Let me decide if I needed help first, don’t just assume but it was standard protocol after a very invasive and life altering procedure that required pain management. I went to follow up appts literally kicking, screaming, and pitching fits the whole way there at what a complete waste of everyone’s time and rubbishy it was, which I’m not proud of that behavior, and while I still see him once a year from the get go he oversees/manages most of my prescriptions which is a lot easier that’s way we have an understanding that he’s there if I need him but we usually talk about the weather or other mundane topics. I’ve only shared once when I struggled when my only child went away to college and I missed her so much which led to something else to talk about other than the weather. Their have been times in the last five years when my health took a nose dive and was diagnosed with a laundry list of other things, including EDS, that it would have been helpful to talk him but I just never felt comfortable doing so with him. It wasn’t until my daughter started to see one due to a break up right before her wedding from a her controlling and mentally abusive fiancé did I have the ah-ha moment where if we don’t like how we were treated from a dr we find a new one, right? The same applies with psychiatrists, you have to connect with them in order to really share and I’ve never connected with this one, he’s nice and all but the shoe didn’t fit to share. Is their a conflict of interest in having two Psychiatrist’s, can it be done, do they share notes etc these are all things I’m about to find out and your post hit the nail in the head on so many levels. I’m glad to hear you survived the move, I do hope you’re still in WI and our WI EDS liaison and will continue with your blogging. It’s rare that I reply to posts because I know how wordy I can get but I couldn’t let this one go without a huge thank you for the topic and all that you do. You’re appreciated more than you know!

  2. Stephanie Vander Pas / December 22, 2018

    Jeanne—I’m so glad to see that you commented. My husband and I are still in Wisconsin; we’ve just moved from Whitewater to Racine so I will still be around to work with the group.

    So much of what you’ve written here is so important. One thing I would stress to you that stuck out to me is the part about talking with your therapist about mundane things. That SCREAMS to me that you aren’t working with the right person for you. I went through so many different psychiatrists in my lifetime to find the right one. You have to click with this person. If you’re not finding yourself discussing those things that are really affecting your life, look for a different doctor. Therapists know they aren’t always the best fit for everyone and that’s okay. I know for a fact my own therapist is a very blunt man with an approach to psychiatry that doesn’t fit every person’s personality, but it’s absolutely perfect for me. I would encourage you to find someone who makes you feel like you’re just talking to a REALLY SMART friend who can actually fix your problems. That’s how I feel when I’ve clicked with a mental health professional.

    I do actually work with two different mental health professionals. I work with a psychologist who specializes in chronic pain. That person really only focuses on techniques that may reduce my physical pain and coping strategies for the pain itself. I also work with a psychiatrist who specializes in trauma and anxiety, two issues that pose major challenges for me. They absolutely work together and I’ve made sure to do all the necessary paperwork to make them a team. They also work with my primary care doctor and my pain management doctor to make sure all my needs are being met and there are no issues being overlooked or medication problems.

    I used to really be frustrated when my doctor would encourage me each month to speak with one of their psychologists. After I started that, I realized how much more help I could be getting and how big a toll this really all was taking—and most importantly, THAT IT IS NORMAL AND THERE IS NO SHAME.

    I hope I’ve somehow been helpful to you. Thank you so much for your kind words. It means the world to me to know I’m reaching people—and I LOVE hearing about dogs, so always feel free to share that, too.

Together we are stronger!