32 'hacks' that can make life with ehlers-danlos syndrome easier

32 'Hacks' That Can Make Life With Ehlers-Danlos Syndrome Easier

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Living with Ehlers-Danlos syndrome (EDS) is no easy feat. You may struggle with intense pain and fatigue, or constantly worry about moving your body in a way that will cause one of your joints to sublux or dislocate. It can also be difficult to find a doctor and/or physiotherapist who is knowledgeable about EDS, and friends who understand the physical and emotional struggles you face every day.

Although there’s not a cure for EDS, some people have developed tricks they use to prevent or manage symptoms. We asked our Mighty community to share some of their “hacks” for making life with Ehlers-Danlos syndrome a bit easier. Maybe some of these ideas will help you live a bit more comfortably, too.

 

Here’s what the community shared with us:

1. “Lots of pillows in bed. I have to prop myself into a certain position or things start subluxing in my sleep.”

2. “Get a good physical therapist. My PT is like a dad to me because he’s been working with me since I was 14. He is such an amazing resource. If I have any questions he figures out answers for me. He calls around to my doctors and does lots of research if he doesn’t know an answer to a question I have. PT has given me the ability to have some normalcy.”

3. “Hot bubble baths! It’s a pain getting out of the bathtub, but sitting in the hot water with bubbles helps with my joint pain, so it’s worth it. I subluxed my hip the other day, so I took a hot bath and the hot water made it feel 10x better!”

4. “I do all my shopping online. No lifting and walking required.”

5. “Facebook EDS support groups. I’m, in a sense, surrounded by people who understand my pain, struggles and worries. It helps just knowing that my feelings are validated by others, rather than being brushed off. It gives me the emotional strength to keep fighting and spreading awareness.”

6. “I shower at night before sleeping. Otherwise I’m way too worn out to make it through the day.”

7. “I keep a trash bag in my car so on the days when my vertebra are misaligned, I can put the trash bag on my car seat and sit on it to swivel in and out of my car easier.”

8. “Always carry an emergency kit. I always have a pair crutches in the car, and an extra set of medications on me. I also always have an extra set of chargers and my medication list with a protocol letter with me. EDS is unpredictable, so I’m always prepared for Murphy’s law.”

9. “I sit down when I get too tired. I also take naps often when I need to.”

10. “I do progressive muscle relaxation for when I’m way too stressed or have insomnia.”

11. “Cheap memory foam insoles for your shoes. Try to wear flats or something with a heavy sole. Anything with even a slight heel is hell for me. Shoes that cover the ankle are more supportive – even just Converse.”

12. “Thermal leggings. They act like compression leggings and a heat pad in one – a must for the winter or a bad flare.”

13. “I use voice dictation software to write papers more easily and save my fingers some typing.”

 

14. “I drink a full glass of water right after waking up and before bed so it helps regulate my heart rate.”

15. “My pets. They never judge or make me feel broken. They just love me as I am. They help keep my mood positive on the days where everything hurts and I can’t do anything.”

16. “I’m a songwriter and Ehlers-Danlos has made it quite difficult to play guitar. A few months ago, I invested in some finger splints to help with dislocations. They are super helpful and make using my fingers less painful. My handwriting has also improved dramatically.”

 

17. “A rolling laundry basket so I don’t have to carry heavy baskets around. I use this for many things beside laundry.”

18. “I use a bar stool at the sink for when I am unable to stand to wash dishes. I also have a TV tray stand that I use when I’m in a wheelchair and can’t reach the counters so I can prep and still do some cooking.”

19. “Having a pillow right next to my home office chair so I can lean over the table and rest when it feels like I’m going to pass out from overwhelming tiredness.”

20. “I have found easy hairstyles such as a wearing my hair in a cute bun because I just can’t do my hair every day. It’s too much on my joints.”

21. “I always keep a ‘pharmacy bag’ with me that has my allergy medicine, painkillers, an emergency inhaler, a fan, etc. and it has come in handy so many times. I also always keep my knee supports and an Ace bandage with me because more times than not, I find myself needing them to be able to walk.”

22. “I use a brush to do dishes instead of a sponge because scrubbing with a sponge makes my fingers hyperextend.”

23. “I use my heating pad or ice packs whenever possible as a natural way to relieve pain. My headache hat and my heating pad are my best friends!”

24. “I have vascular EDS and heat causes serious problems. I use cooling cloths, infusion cups to make sure I get plenty of water with fresh fruit, get groceries in the evenings when it’s cooler and stay indoors during the hottest parts of the day.”

25. “Going to a pain doctor that understands. It took me, as a 23-year-old, a year and a half to find a pain clinic that didn’t discriminate against a young girl like me, that understood my pain disorders and my needs.”

26. “Ultra Strength Bengay cream is my best friend. I use it practically all over and it feels amazing.”

27. “Comfy clothes and pajamas. I can’t stand certain fabrics touching me so the material is the most important thing in clothes.”

28. “I keep my house clutter-free. No knick-knacks lying around to trip and fall over since I do that enough on flat ground.”

29. “I take a muscle relaxer every night. It helps me by giving the muscles around my joints a rest. Then I use braces and KT tape when the pain really flares up.”

30. “Buy bags of frozen prepped vegetables. For example, I buy frozen chopped peppers and onions. I know you can get all sorts of other stuff too, like garlic, ginger and even sauces. But for me, just having that main bit of prep done helps a lot.”

31. “If I have to go to the emergency room, I now take my pillow with me because I know I’ll be there for a few hours at least and want to be as comfortable as possible.”

32. “Friends who make the effort to understand! One of the nicest things anyone has said to me was, ‘I Googled EDS last night. It sounds really tough! How are you doing?’ Small gesture, but meant the world to me.”

32 'Hacks' That Can Make Life With Ehlers-Danlos Syndrome Easier
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To the Friend or Family Member Who Doesn't Understand My Illness

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It has been 13 years since my symptoms began to manifest and five years since the first of my five diagnoses. Some have you have been with me and supportive from the very beginning, some of you waited until I began receiving diagnoses to acknowledge there is something wrong, some of you have only known me a few years, some of you decided to end our friendship for various reasons related to my illness, and while most of you acknowledge I am sick, none of you (apart from those who also have chronic illness) understand what I feel like 24 hours a day, seven days a week, and will continue to feel like every day for the rest of my life.

Acknowledging I am sick and understanding my illness are two very different things. I recognize that, on the surface, it appears there is nothing wrong with me and it can be difficult to wrap your head around my invisible illness. What you see is my mask. It’s the mask I wear from the minute I step out my bedroom door in the morning, knowing I must interact with a world that doesn’t understand or want to deal with the reality of my pain, and keep on my face until I’m back in my bedroom for the night.

 

What you don’t see is that at any given time, at least one (but usually several) of my joints are either slipping in and out, or stuck partially out of the sockets. You can’t see that my tendons and ligaments are stretched too far, too thin, and are covered in micro-tears. You don’t know that every night, I never truly fall asleep because I have to be aware of my body and how I’m laying because if I move the wrong way, I will dislocate my shoulders. You don’t know that even when I do manage to fall asleep, I’m awoken in the early hours of every morning by the agonizing pain of the tears in my back muscles that never fully heal. You don’t see that I set my alarm for three hours before I need to start actually getting ready because it takes me that long just to gather the energy to get up and that, once I do, every single step I take afterwards is completely exhausting, regardless of how much sleep I’ve gotten.

You don’t see that when I’m walking into a building, I have to use the handicap button to open the door because it’s too heavy and I physically can’t open it on my own. You can’t see the head-to-toe body pain that feels like I have been simultaneously hit by a truck, set on fire and dipped in acid. If you could see what I was feeling, you would see a body that is hunched over and covered with bruises that are black and blue. Just the feel of the clothes against my body is excruciating – even my face hurts. The bones slip in my feet as I’m walking and the bones slip in my hands when I write. My knuckles are subluxing as I type this.

You can’t see the battle going on in my head as I fight through the brain fog to get my thoughts out. You don’t know that I take enough medications and supplements every day to fill a 2-gallon Ziploc bag or that I have to wash my hands 100 times more than a healthy person because my immune system doesn’t function properly. You don’t know that I spend every hour of every day feeling like I’m going to vomit and having to force myself to eat.

I know this is a not a pretty picture I have painted for you, but this is my life. I hide these things from you because this pain is mine and not yours. I get out of bed every day because I choose to fight and live my life. I put on my mask and smile because I choose to enjoy and appreciate the time we have together. That being said, here are some things you can do to help me:

Don’t make assumptions about what I can and cannot do. I know it’s difficult to understand, but things that may seem trivial and easy for most people can be and are very difficult for me. Instead of making assumptions, if you want my help with something such as unloading the dishwasher, folding the laundry, etc., please ask me if it’s something I feel up to doing, and please don’t be upset with me if I tell you I’m not.

Don’t tell me how to live my life or what will make me feel better. When you make comments about how much time I have spent in bed when I could have been out doing other things, it makes me feel bad about myself. I already hate the fact that I spend a good chunk of my life lying in my bed when I could be out enjoying the beauty of the state we live in or spending time with my family and friends, so having you call attention to everything I’m missing is just rubbing salt in a forever open wound. I know you mean well when you tell me I’ll feel better if I just get out of bed and get some exercise or recommend a treatment you have heard about, but chances are I’ve already heard or tried these recommendations a thousand times before and, at the risk of unintentionally sounding rude, I’d much rather discuss my options with my team of medical specialists.

Be patient with me. If you ask me to do something, it may take me a while to get it done. If we’re out together, I may move a little slow. If we’re having a conversation and I can’t get my words out, please don’t get frustrated. I promise that in that moment, I’m frustrated enough for the both of us. If you send me a message, please don’t be upset or angry if it takes time for me to respond. It doesn’t mean I’m ignoring you, it simply means my mind is exhausted and it’s too difficult for me to form a coherent thought. I promise I will get back to you as soon as I can.

Please don’t be angry with me. There will be times where I am too sick, too tired or in too much pain to get out of bed. It’s difficult for me to plan ahead and there will be times I have to cancel last minute. I have and will continue to miss important events. I may miss a birthday party, a family get-together or a wedding here and there, but it’s not because I don’t love you or don’t want to be there, but rather because I physically can’t.

Listen. I don’t often complain about how I’m feeling, but sometimes I just need to vent. You don’t need to try to come up with something to say to comfort me. The only comfort I need from you is your listening ear and gentle hugs.

Ask me if there is anything you can do to help. More often than not, if you ask me how I’m doing, I’ll grit my teeth, smile, and say, “I’m OK,” or “I’m fine,” but know I am almost always lying. That being said, please still ask me if there is anything you can do to help. I may decline, but it will help me just to know you care and are thinking of my well-being. I also may need some help getting my laundry upstairs…

Know that I always love you. I may not always be able to show it, and I may not tell you enough, but there isn’t a moment that goes by when I don’t love and appreciate every single one of you.

I know this is a lot to take in, but I’ve felt recently that we have had a difficult time communicating and I wanted to share these things with you in the hopes of helping you to gain just a glimmer of understanding of what I’m feeling, so we can have a stronger relationship moving forward. Thank you for taking the time to read!

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Thinkstock photo via Ryan McVay.

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To My Future Baby, Who Might Inherit My Chronic Condition

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Dear baby,

I know you must question why I decided to have you when there was a chance of passing along my disease. The truth is, every inch of my body wanted you so badly I saw no other option. And your dad – wow, your dad was so supportive and reassuring. He wanted you too, so badly, and could see how much I wanted you, so we both decided it would be worth it and we could make it work.

I’m going to let you in on a little secret now: I have had all the feelings you are experiencing and are yet to experience. I know and I understand the pain and how left out you might feel. But I also know about that fire burning deep inside you that keeps you going, even on days you feel like giving up. I know the compassion you feel for every other human being who is struggling with whatever ailment they have, and I know that feeling of not wanting another human being or creature to feel the pain you feel.

 

I know you will sometimes question how you can carry on, how you can keep fighting and how you will survive another day. The answer is this: you are a warrior. You can do absolutely anything you set your mind to, and you have your dad and I supporting you 100 percent no matter what.

The truth is, you might have days when you’re mad at me for passing on this condition. You might sit in the corner and cry and not want to take another breath. But I also know you’ll eventually run out of tears and you’ll realize you are OK, that things are tough and that some things aren’t fair. You’ll go to bed exhausted, but you’ll get up the next day your bubbly self as if nothing happened, because you know life goes on and that everything will work out OK in the end because you have God on your side and you are only ever given a life you can handle.

Baby, I cannot promise you a life that is all sunshine and rainbows. There will be days where you have to do things for me because I cannot get out of bed in the morning and Dad can’t take time off work to help. There will be days I have to carry you down the stairs or wash your hair because you have used every ounce of energy that day. No doubt there will be countless duvet days and movie marathons. There will be take-out nights because neither of us can stand to cook or wash dishes and our local Chinese restaurant will probably know us by name.

Like me, you might have sarcastic humor you use to help you cope with everything you deal with. But what I can promise is you are loved unconditionally and have our support no matter what. You will always come first and your happiness is our number one priority. You will get through this my darling, I promise you.

All my love,

Mama

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Thinkstock photo via Mike Watson Images.

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It's OK to Have Teary Days When You Live With Chronic Illness

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It’s taken a long, long time to realize this. 34 years, in fact. But I’ve finally realized that when living with hypermobile Ehlers-Danlos syndrome (hEDS), chronic pain and mental illness… It is OK to have a day, or week, or month where all you do is cry.

I’m having a teary day today. Hormones are flying around, so I’m extra stretchy and loose. I feel like someone has suddenly removed the bolts from each of my joints. I had a massage on Tuesday, with one of the few therapists I trust with my body, and she told me my shoulder blades have slid round two inches from where she’d expect to find them. She confirmed what I already knew – my body is literally falling apart this week.

I am taking painkillers, but they barely even take the edge off. I’ve also recently acquired a rib that subluxes too. Quite frankly, even just my rib constantly popping is making my eyes water. Not always just with pain, but with emotion. I’m fairly sure most of my fellow hEDS family will know what I’m talking about – when you reach the stage where your body involuntarily cries.

 

Over the years, I’ve shoved this emotional pain away, with busying myself, eating it away and just plain trying to convince myself it’s not there. All of which, in the long-term, increases my pain in one way or another.

I am a positive person. Most people who know me think of me as a positive person. I greet my loved ones with smiles, even when I’m dying inside with pain (emotional or physical). But, quite frankly, the best way to deal with teary days is to let the tears come.

Cry, scream, wail if you have to. Grieve the new subluxing joint. Sob with frustration that this is not the life you wanted.

Depending on how long you’ve held the emotion in, when the tears start, it might be hard for them to stop. Especially if it’s been a week or so, I’d always recommend seeking some advice in case it becomes overwhelming. Talking therapy has done wonders for me. For example, it has taught me that the tears do stop, the feelings never last, that I can always try and find some positive in my teary days – I try to record this to help me on my next teary day. One of the most important things that therapy has taught me is that crying is not me being “negative” – teary days are not only OK, but often needed.

And then, when the tears are over? I re-adjust my crown (or my subluxed joint) and continue – continue to live a life I am proud of.

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Thinkstock photo via Tawatdchai Muelae.

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When Gravity 'Brings Me Down' Due to My Ehlers-Danlos Syndrome

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A little over a year ago, I was struggling up the stairs at my twin sister’s place. Stairs are an obstacle I tend to avoid, and there are many days where it is simply impossible for me to climb them. With my dizziness and depth perception issues, it is hard for me to know where the steps are and I often follow the rises and falls of each step with the tips of my toes, since I can’t fully trust my vision. My body also isn’t very good at knowing where it is in space or in relation to itself, so depending on touch isn’t always entirely reliable either. And, oh boy, I do not want to accidentally miss a step and head toppling to my doom. Each stairway and each day is a different experience, a new challenge, a great unknown full of hidden dangers.

Once, quite some time ago now, I was struck by a bout of unexpected paralysis as I was making my way up the stairs to the kitchen. In a matter of seconds, pins and needles trickled down my spine, followed by a shaking and rolling of my eyes, and then a weakness and accompanying weight in my legs, dragging me down. I used my hands on the railing and the wall to slowly guide myself down to avoid the abrupt drop which was certainly coming. Hugging the stairs like a safety blanket, hoping to high heavens I wouldn’t fall, I did a body scan and realized I had lost all feeling and command of my legs, and could feel it spreading to my left arm. After nearly a half an hour of attempting to find my bearings amongst the pain in my spine and the vertigo and loss of vision surrounding me, I knew this would be a longer episode, and that it wasn’t wise to stay on the stairs. A housemate carried me down to my room in his arms, an ordeal as painful as disorienting.

 

Not every encounter of mine with a flight of stairs ends in such a fashion. Sometimes I’m the stair master, reaching the top so quickly that – once I’ve cleared the danger zone at the top – I break out in a frenzy of jubilation that only Donkey from Shrek can rival. The feeling of success and empowerment and this thankfulness I have for my body and what it can still manage helps me deal with the fatigue from the exertion of forcing myself up the stairs.

For me, going upstairs is far more of a challenge than going down. I can feel my heart pounding in my chest, feel the uncomfortable sensation of blood pooling in my feet and sense my head going all light and floaty, all while my hips, knees, ankles, and feet scream their opposition by sending pain signals and threatening to dislocate. Going down doesn’t cause the same kind of stress on my heart, and except for on extremely high dizzy days or pain days, I try to go down them as practice – I just have to be super careful not to dislocate something or lose my footing or balance. Of course, there are some days where heading downstairs is just as difficult and dangerous as going up.

But let’s get back to that moment with my sister. I’m about three-quarters of the way up the stairs, hand gripping the railing, heart pounding and head spinning. My left leg is doing its delayed response thing where my brain is practically shouting at it to get moving while it sluggishly responds; my toes turn inwards, as my leg, almost like a dead weight, slowly drags itself up to flop where it belongs, demanding a rest before moving on to the next step.

I take a deep breath and sway slightly. Then my sister, directly behind me, starts singing John Mayer’s “Gravity.” It’s a woeful wail with a tinge of playful sarcasm: “Gravity…is working against me.”

She doesn’t make it further than that before I hear a startled gasp – the unvoiced equivalent of “Damn it, what have I done?” I wish I could have seen the “oh shit” expression on her face as I felt her panic rising about being insensitive or rude. But I wasn’t upset or offended; on the contrary, I cracked up laughing. The laughter rolled through me and I had to steady myself by putting my hands down on the stairs, and then I burst out singing the rest of the lyrics.

It fit so perfectly.

Every day, every moment of my life with Ehlers-Danlos syndrome and POTS and my other health issues, I’m working against gravity, both literally and figuratively.

With the effects of my connective tissue disorder, gravity is literally pushing me down and pulling my bones apart. If I sit in a chair that my legs dangle from, I can see my foot slide away from my leg at the ankle, and feel the weight of my leg pull my femur out of the hip socket. I constantly have to keep strengthening my muscles to try and support my unstable spine, to keep it from collapsing under the weight of my head. Sometimes I have to actively think about breathing as I struggle against invisible forces that make it very difficult. There are days when resting in bed is both my dearest friend and my greatest enemy. Lying down provides some relief from symptoms like low blood pressure, palpitations, headaches, dizziness, etc. However, my joints are so loose that no matter how I position the pillows, simply lying there causes terrible pain as my bones slip around in response to their own weight. Something as simple as a handshake or a hug has the potential for causing multiple dislocations.

As for the figurative side of things, I’m trying my best to function despite all sorts of struggles that seem to push me in the exact opposite direction of where I originally planned on going. My health problems have challenged my ideas of what my career will be, my definitions of beauty and strength, my views of the world and so much more. A progressive disease takes bits and pieces of your life away from you, sometimes slowly, sometimes quickly, but no matter what, it is a sad and painful process that is hard in many ways.

“And gravity, wants to bring me down…”

Coming to terms with health problems and disability is a grieving process full of many farewells, such as bidding adieu to a dream career, late nights out, a favorite hobby, walking without mobility aides, tying shoe laces and so on. It is not necessarily pleasant and can include all the varying stages of disbelief, anger, bargaining, depression, reconstruction, acceptance, etc. One of the best things for me was finally reaching a place of acceptance, being able to finally be OK with what’s happening and not hating myself or my body for it. But that is a long process, one that often has setbacks.

“Dream of ways to throw it all away…”

No matter how accepting I’ve become of my chronic illnesses and related limitations, I have days where I am angry, where I wish my illness would just leave me alone. Sometimes I wish I didn’t have a body, or that I had a healthy body and could easily do the things I miss so dearly. But the truth of the matter is that such contemplations don’t really help me personally, and I’m happy to be here and be the person I am – I just have to remind myself of that every once in a while.

“It’s gonna send me to my knees…”

On a day where I fall or faint or am paralyzed, on a bad day that has me wailing, crying out and collapsing from the pain that refuses to be managed by any intervention, or on a day where I’m so dizzy I can barely function, I can feel like all of this is too much for me to handle. The unsteady progression of my illness and the switching back and forth between wheelchairs, rollators, canes and bed rest can be scary and demotivating. The cruel words of strangers who don’t understand invisible illness can sting. The financial burden of doctor appointments, tests and medications can be overwhelming. I can’t lie and say I am always hopeful and happy, because there are days that are truly difficult. But no matter what, I will not let this bring me down. It is hard, but I will not let this stop me from living life to the fullest that I personally can, and from being proud of who I am.

“Just keep me where the light is…”

Laughter like the delightful outburst on the steps with my sister helps to keep things bright. Dealing with my disease with humor is a tool I’ve come to love. Making sure to always try and find a silver lining is something I’m kind of known for. For me, that doesn’t mean ignoring the seriousness of a situation or brushing aside the negative aspects, but simply acknowledging there is some good, too, no matter how small.

All of us in this world have our struggles, our versions of gravity that seem to be bringing us down. We need to find the things that help to make that manageable for us, whether it is bursting out into song, finding someone to talk to, playing video games, writing poems, reading, being super goofy, whatever. I’ve found that acknowledging and sharing the burden is one of the best ways for me to move forward.

Before this lovely moment of song on the steps, it had been a while since I’d heard “Gravity.” When I was a teenager, dance was my passion, and in modern class we would often dance to that same song. It was usually to a combination of swings that played with our centers of balance, providing me with that exuberant feeling of weightlessness that I miss so terribly much. Now listening to this song on bad days, smiling and thinking of it when walking is a struggle, when my head feels too heavy to lift, helps to give me that feeling of flight again, despite what gravity throws my way.

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Thinkstock photo via Eloi_Omella.

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The Part of Katy Perry's Therapy Session I Disagree With as Someone With Chronic Pain

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I recently had the chance to view the live-streamed therapy session with Katy Perry. While I am not here to judge Ms. Perry in any way, I do feel there is something about the broadcast that needs to be addressed.

As someone who lives with a chronic pain condition, I really didn’t like something that the therapist, Dr. Siri Sat Nam Singh said. He spoke of how when people are inauthentic, they tend to somaticize their problems. This means that “symptoms will come in your body.” He went on to say that he has worked with many individuals with, as he said, “quote incurable diseases” who go to doctors only to be told there’s nothing wrong with them. The therapist then said being inauthentic puts you at risk for consequently somaticizing your problems and “creating symptoms in your body.” Based on my experience, I strongly disagree.

Jump to 38:30 to watch the clip:

Just because a doctor is unable to find something wrong upon examination, or even after doing multiple diagnostic tests, this does not mean that there isn’t something wrong. It also does not mean that the pain is purely psychologically based. There are many people out there who are struggling with very real physical conditions, and I believe having a professional do a live therapy session with a well-known celebrity, probably to be seen by millions, and say this does not help our case. In my opinion, it only adds to our struggle. Saying that we are somaticizing our symptoms and labeling us as hypochondriacs can actually make things worse for us and reinforce the assumption that we are making it all up, or simply looking for attention.

I have personally been struggling, as have many more, to get an official diagnosis for my condition, hypermobile Ehlers-Danlos syndome, or hEDS. This is supposedly a rare condition, but as I like to say, “it’s not rare; it’s rarely diagnosed.” The reason for this is that there are very few people out there, including doctors, who have knowledge of hEDS, largely due to lack of awareness. Some doctors suggest doing things such as meditation, cognitive behavioral therapy (CBT), taking antidepressants, etc., to help us manage our physical pain. While I am not saying this may not in fact help some, it doesn’t help everyone, and it doesn’t get to the root of the physical problem. Not everything that we feel physically is a manifestation of some inner psychological turmoil. This is why we are not taken seriously.

I, myself, have tried talk therapy, CBT, antidepressants that are supposed to be geared towards pain management, as well as meditation. I have yet to find something that works for me. And why is this? Because, contrary to the often popular medical opinions of doctors and physiotherapists, it’s not all “in my head.” It is a very real, debilitating, day-in-day-out physical condition with many co-morbidities that limits me in countless ways. The bottom line here is that in order to receive proper treatment, patients need to be taken seriously by their physicians and health care team.

Many doctors are unaware of the different syndromes out there that can cause chronic, widespread pain. Unfortunately there are also many more who are just unwilling to learn about them, or sometimes even to send us to another doctor that may know. They are essentially dismissing our problems and chalking it up to somatization. Until this stops happening, and doctors start listening to their patients and taking their complaints seriously, countless people will continue to suffer, and continue to feel invalidated and unheard. This, in turn, will no doubt lead to psychological distress. Maybe, in that way, the therapist had it backwards.

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