My heart hurts so much for you both, for so many reasons…

I have Ehlers-Danlos Syndrome (EDS) and many more conditions associated with EDS (comorbid to, or pathological of), including severe osteoarthritis, Degenerative Disc Disease, Tethered Cord Syndrome, Intracranial Hypertension, CSF leaks, Chiari Malformation, and more.

Ehlers-Danlos is a Hereditary Disorder of Connective Tissue (HDCT) that involves a mutation in our body’s collagen (the most abundant protein in the human body, often described as the “cellular glue” that holds our bodies together). It’s not unusual for patients to wait years or even decades for a correct diagnosis, because it is misunderstood and underdiagnosed. We suffer for years before a doctor is willing to diagnose us because it is a fairly rare condition and it is incredibly systemic in nature (affecting so many things throughout the body that it crosses from one specialty to the next). It can affect our joints, heart, brain, gut (and ability to properly metabolize foods and supplements), mast cells (tryptase/histamine levels), hormones, vision, hearing, and every organ and muscle inside of our bodies right out to our skin. The most common type of Ehlers-Danlos is Hypermobility Type (hEDS) and there is no genetic test to confirm or deny it, diagnosis is based on clinical evaluation. BUT THE PAIN IS VERY REAL AND EXTENSIVE!

Dr. Phil has the entire Ehlers-Danlos community (a well-organized community) up in arms about his flippant dismissal over your symptoms, since it’s obviously not his field of expertise. Although you clearly some depression going on. I hope that you both will benefit from the therapy he offered. Therapy is a good thing and can be tremendously beneficial when living with a chronic pain condition, especially over a lengthy period (which often ends up being a lifetime for EDS patients). The pain from Ehlers-Danlos is not psychosomatic and there’s no amount of counseling that will repair the wide-spread damage going on in our bodies (whether Dr. Phil realizes it or not). Unfortunately, knowledgeable doctors are hard to come by.  But they do exist, so please be encouraged and keep looking.

As with most chronic conditions, there are many things outside of our control that we need a medical professional’s help with (most of us live from one surgery to the next). We can’t change our DNA and since hEDS is believed to be autosomal dominant (meaning that only one parent need have it for it to be genetically passed on to a child), means that there is a very real possibility that both of your daughters will suffer from it one day as well. However, we ARE NOT POWERLESS IN OUR FIGHT! There are still things that we can do that are within the sphere of our control. I noticed that your daughter was giving you milk and what appeared to be a chicken sandwich on a bun (and the chicken appeared to be a frozen chicken patty). As mentioned, we don’t metabolize certain foods well, and dairy, processed foods, sugars (even sugar substitutes), gluten (and gluten substitutes), and complex carbs, in general, are all high on the list of things that we tend to have problems with. For the most part, we tend to have inflammatory reactions to them, and that inflammation isn’t distributed to just one part of the body; it can happen everywhere including in our gut, joints, back, and even the brain (especially anywhere there’s an injury). Increased inflammation means increased pain (and even brain fog).

I’m glad that Dr. Phil offered life-coaching and help from the PNP Center. I encourage you to take him up on it and get all that you can from it. Their knowledge of EDS is probably substantially limited and even if you “really have it,” they’re more likely to simply concentrate on behavioral therapy and ignore what is likely “really going on with you.” But I encourage you to get all that you can get from free services and then get ready to fight for a proper diagnosis and help with your pain and symptoms. THAT IS THE FIGHT!

I’m diagnosed, and I know the fight, so I can’t be as easily bullied by Dr. Phil. It’s a hard life to live and depression (including suicidal thoughts) is common in our community. Nobody “wants” to endure a life of pain. Nobody “wants” to burden their family members. I work from home the best that I can, in between medical procedures, but for the most part, my husband is my caretaker (something else that Dr. Phil has dishonored on one of his previous shows). My father helps and so do my adult children (as they can). Even my five-year-old grandson understands that grandma is sick. He knows that he needs to be careful around me (he says that his “grandma is made of glass”). When I drop something, he’s eager to help me reach it. It’s not ideal, but it’s real-life (something that Dr. Phil appears to have forgotten). I’m very blessed to have the support of my family. I am honored to have their support and understanding (although I’ll admit, I’m not always good at showing it). My children knew that their mom wasn’t well from a young age. I became symptomatic at age 29 and it took ten years for my first diagnosis, and another five years for me to be correctly diagnosed with an underlying connective tissue disorder (EDS). It was hard on all of us, especially before my diagnoses started rolling in. (And I say “rolling” loosely because most of the diagnoses aren’t easy to get). We tend to spend many years complaining of each problem before a doctor cares enough to listen so we can get properly diagnosed – and those diagnoses usually all end up related to the EDS in one way or another. But as disabled moms (and grandmas), we continue to do our best to love our families back and do what we can when we can to help lighten their loads and ease their burdens. Some days I can help more than others, but on the days that I can, I do. And even when I can’t, I still have value in this world as their mom, and SO DO YOU (even though I realize that you probably don’t feel like you do right now)!

Honor and respect don’t seem to have been a priority in your relationship, and that’s sad. Despite the thanks that you give her, nothing demonstrated your lack of gratefulness for all that she’s sacrificing for you, in that you stole from her. In doing so, you dishonored the love that she’s been giving you. You showed contempt for her love. Even if you never established direct boundaries, I believe that you knew that you were crossing a line. No amount of depression can justify what you did. It hurt her and love protects, it shouldn’t intentionally hurt. That’s going to have to be something that the two of you will need to work on healing together… BUT YOU CAN HEAL FROM THAT!

Cheyenne, if EDS really is in the genetic line of your family, it’s not just going to go away by sending your mom away. You probably need help with healing your heart before anything else, and you definitely need to establish healthy boundaries with your mom (whether she lives with you or not). If that man of yours really loves you, he’s going to have to have to learn to love you through EDS, because the likelihood of you (or your kids one day) becoming symptomatic is high. If he doesn’t love you enough to honor your love for your mom, then he’s not likely to love you (or your children) through symptoms and pain should you become symptomatic. When you marry and say, “I do,” it’s just that, “for better or worse.” It’s not an “I will, if you…” situation. And his momma, boy I have some words for her that I’ll just keep to myself. I realize that she’s trying to love you the best that she can in the situation that you’re in, but people who have no understanding of something shouldn’t be presumptuous enough to say something on a topic outside of their understanding. If she doesn’t believe your mom’s symptoms, she won’t likely believe your symptoms later should they develop. If she was presumptuous enough to talk about your mom and her symptoms behind her back (since she doesn’t even know her), she will likely talk about you and any symptoms when/if you develop them, behind your back as well.

In closing, I’d like to say that despite all that you have gone through TOGETHER, I hope and pray that you don’t throw it all away. You really could be an amazing MOTHER/DAUGHTER DUO that takes life (and all that it throws your way) by storm TOGETHER! It will take a commitment from each of you to stay connected and establish and respect healthy boundaries in the future. Those boundaries are healthy for both of you and are built on love and respect, not on guilt and manipulation. I run several things in our community that might be able to help empower you both, but whether it’s through me or anyone else, I sincerely wish you all the best in this difficult hand that you’ve both been dealt.

Best Regards,
Michelle Cole

Note: This letter is in response to an episode that aired on February 25, 2020. While Dr. Phil only has segments of the episode on YouTube, somebody does have it posted in its entirety here, should you wish to watch it. LINK

1 comments

  1. Firstly, I am so sorry about everything you are going through. My prayers and thoughts are with you. Secondly, I don’t think Dr. Phil was flippant, or even condescending, about Cindy possibly having EDS. His point was, that she didn’t even know if she had it. She had not actually been diagnosed by anyone! So, to say he was flippant about it is well wrong. Idk how one can surmise that he was even not understanding, the fact that she didn’t know if she had it, Cindy, could not say with certainty that she had it, and obviously neither had a doctor. Dr. Phil might not be an expert in that situation, but, I think an expert “was” needed to say that she was diagnosed, because she had not been yet. The fact that she was using her daughter, and making her feel awful, Is well, awful
    In it self. Especially if she was not as sick as she was leading everyone to believe. I didn’t mean to offend anyone, if I did, I am truly sorry. I just had to put my thoughts out there.

     

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