The votes are in! One hundred and sixty-seven (167) of you responded to our survey about the things that SUCK about EDS. What made it into the top spot as the worst of all? Where did your dissatisfactions rank? Scroll down to find out!

How we tallied the results: Each respondent received the same 19 items to vote on. They could vote on as many as they liked, including none. Each item could be ranked from 1 (low—this thing isn’t that terrible) to 10 (high—this item is the worst.) There were no restrictions placed on how many times a respondent could use a value (i.e., a respondent could vote all 19 items a “ten” if they wished.) The survey was available during EDS Awareness Month, from May 1, 2024, through May 31, 2024. Results were tabulated by taking the number of votes for a particular rank and multiplying them by that rank number. For example, if an item had five votes for 10, we would multiply 5 x 10, for a total of 50. Then, we’d look at number 9, which had 5 votes as well. Multiply nine by five, and you have 45. Once we did that for all numbers in an item, we added up the results (50 + 45 + ….) to get a total score. 

HERE ARE THE TOP TEN!

1. Doctors: arrogant ones who don’t listen to you or believe you or who don’t know anything about EDS but pretend like they do; doctors who dismiss symptoms as impossible or unimportant; gaslighting. 
   You’re not alone! So many patients with EDS and other complex chronic illnesses have trouble with doctor. This is so prevalent that researchers gave it a name: clinician-associated trauma. Read Chronic Pain Partners’ series about clinician-associated trauma.
   
   
2. EDS affects the whole body; there are so many symptoms to manage: brain fog, fatigue, dysautonomia, POTS, mast cells, and other debilitating symptoms; all parts of the body can be affected.
   Chronic Pain Partners has a wide variety of articles and webinars about the various symptoms that come with EDS. This is obviously not complete–let us know in the comments what you want to hear about!
   Mast Cell Activation webinar* | POTS Summer Survival guide* | Cervical spine instability* | Sleep disorders webinar* | Gynecological and sexual health* | Long COVID* | Ways to Improve Symptoms of Peripheral Joint and Spinal Instability webinar* | Gastrointestinal webinar* | Celiac, mast cell, or gluten intolerance?* | MCAS patient guide | Pain webinar* | Guide to tethered cord* | Preventive care for patients with EDS*

3. Pain–acute, chronic, muscular, neuropathic, and everything in between.
   Ugh, it’s a pain in the…well, everywhere, really. Doctors are finally starting to realize how painful EDS can be for some people. Check out these articles which may help you find new ways to deal with pain.
   Neuroplasticity and treating pain* | Pain thresholds in cEDS | Small fiber neuropathy
   
4. Giving up hobbies, work, relationships, driving, cooking, and other important things because you can’t do them anymore.
   Giving up things you love or that make you feel independent can be depressing beyond words. Here are some articles about how to find your way back to the things you love or need to do.
   A personal story of needing accommodations | Schooling alternatives | Advocates to follow on social media

5. There aren’t any connective tissue doctors, only other specialties who have decided to learn about EDS. It’s difficult to know who might have answers to your questions.
   If only there were connective tissue doctors! However, there’s a new way to connect with EDS specialists: telehealth! 

6. Having to rest when you don’t want to. Learning how to pace yourself. The cycle of overdoing it, resting, feeling great, overdoing it because you’re feeling great, resting… 
   The feeling of needing to get stuff done but knowing your body needs to rest can be an overwhelming struggle for those with EDS. Here are some ways to cope with those feelings and find strategies that might help. Do you have any techniques that work? Share them in the comments!
   Pacing tips for managing the “bust and boom” cycles of energy | Spoon theory explained

7. EDS is an invisible illness and not well known. Others have a hard time understanding what it’s like to have EDS. (Tied with 8.)
   A little empathy and recognition is all we’re asking for. It’s often a lifesaver to meet others with EDS–people who really understand what it’s like to live with this condition. Some of the links below will help you find some social media accounts to follow. Others will highlight an individual and how they manage their EDS.
   Six popular people with EDS | Organizing and managing your social media webinar | Interview with Cassandra Campbell: Finding Acceptance | Interview with Jack Briar Pollock: Challenges of Being Trans with EDS | Interview with Kaleena Deshawn: Challenges as a Person of Color with EDS, Fibromyalgia, and ME/CFS (Chronic Fatigue) | Interview with Brianna Cardenas: Challenges as a Queer Woman of Color with EDS

8. Treatments: There’s no cure and treatment is just for the symptoms. There’s conflicting advice about how to handle EDS symptoms, and it’s difficult to know what really works because there’s a lack of research. (Tied with 7.)
   Sometimes it seems like there’s a new idea to try for EDS symptoms every day. There’s no way to tell what will work for an individual person. While Chronic Pain Partners offers some information about things you can try, remember: always consult with your doctor or another trained professional before trying anything.
   Overview of EDS and HSD management webinar* | Prolotherapy & PRP* | Craniocervical instability surgery* | How to build an EDS plate webinar* | Cranioscacral therapy webinar*

9. Getting diagnosed can take a long time and be a difficult journey.
   According to the Ehlers-Danlos Society, it takes between 10 and 12 years to be diagnosed with EDS. That journey is a long, tough road. CPP has some articles that offer some hope:
   NEW! Norris lab finds hEDS gene: kallikrein | The 2017 hEDS diagnostic criteria and what needs to change | EDS is not all in the head

10. There’s an overwhelming amount of appointments, procedures/surgeries, referrals, medications, and things to do to take care of yourself. 
    Do you have your doctors’ phone numbers stored in your phone? Do you see them more than some of your family members? When you have a surgery or procedure scheduled, is the most common response, “Another one?!” Here are some resources for managing all of those appointments, procedures, and doctors. If you have a good system, share it with us in the comments!
    Successfully mastering appointments | Preparing for a surgery and hospital stay

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The following items didn’t make the top ten, but that doesn’t mean they don’t suck. We have these in order of the votes they received and some resources that might help. 

11. The cost of having EDS: insurance costs, out-of-pocket-costs for things that insurance doesn’t cover, paying for treatments that don’t work, paying extra for things like food delivery because you physically can’t go to the restaurant, and others. 
    Tax deductions for healthcare-related expenses** | Financial resources for EDS patients

12. Mental health issues: depression, anxiety, isolation, loss of independence, grief, body image issues, loneliness, toxic positivity, imposter syndrome, and more.***
    How to foster self-compassion | Holiday hacks: realign your expectations | Coping strategies and how to support people with chronic illness | Interview with Dr. Pradeep Chopra regarding the psychological and psychiatric aspects of EDS and HSD

13. Administrative tasks: dealing with insurance companies, pharmacies, phone calls, SSDI/SSI, accommodations, FMLA, COBRA, finding and applying for other programs and assistance. 
    A step-by-step guide to filing an EDS disability (SSDI) claim | Preparations for securing K-12 school accommodations for children with EDS

14. There’s no genetic test for hEDS.
    NEW! Norris lab finds hEDS gene: kallikrein | Interview with Dr. Norris of MUSC’s Norris Lab | Folate-dependent hypermobility | MIA3 as causative agent for hEDS

15. Physical therapy is almost always the answer from doctors for almost any EDS-related complaint. 
    Jeannie di Bon’s Zebra Club* | Dr. Lilian Holm on physical therapy and EDS* | Physical therapy and sports medicine magic*

16. Intrusive questions and commentary: Hurtful comments like  “I heard Lena Dunham has EDS and she’s a full-time actress, why can’t you work?”; strangers asking for an explanation about visible medical equipment; explaining that not working/being on disability isn’t the same as being on vacation. 
    Clever comebacks for handling offensive comments about EDS

17. Dating, romance, and sex: You never know how a potential partner will react to you having EDS and how unpredictable it can be. Sex can be difficult and painful. Having children is a difficult choice. 
    Learn your love language | Internalized abelism and dating | An interview with Mary Cordaro

18. Unsolicited advice: relatives, friends, strangers, people on the internet who heard Dr. Oz mention something and now are convinced it will cure your EDS.
    Recognizing and dealing with toxic positivity

19. Assistive devices–braces, casts, crutches, wheelchairs, canes, feeding tubes, other orthotics, prosthetics, splints, orthopedic shoes, adaptive clothing, and others. Lack of fun/stylish options for assistive devices and adaptive clothing. 
    Q&A with Ryann Mason will give you a new appreciation for wheelchairs.
    

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*As always, check with your doctor or trusted medical professional before starting any treatment.
**We are not CPAs or tax professionals. Check with your tax professional for more information and details specific to your situation.
*** If you are struggling with mental health issues, including suicidal ideation, please call 988 (in the US) or go to the nearest emergency room. You are loved. You are important. You are worth it. 

Kate Schultz
July 2024