May is Ehlers-Danlos Awareness Month. The Symbol for EDS is the Zebra- “In medicine, the term “zebra” is used in reference to a rare disease or condition. … Ehlers-Danlos syndrome is considered a rare condition and so EDS sufferers are known as medical zebras.” Wiki.( credit). Its been 11 years I have dealt with this condition, and I realize the importance of support is crucial in my wellness.
EDS- Chronic Illness
I have had this condition, or I should say, experienced serious symptoms and chronic pain now for around 11 years. It effects so many young and older people and having to grasp this makes me think I was “lucky”. I don’t know how i would have dealt with pain and dislocations at a young age, growing up is hard enough!
My husband and I have been through the gamut of specialists- rheumatologists, sports medicine, orthopedics, neurologist.. many -“ologists.” We have been to hospitals, going through treatments of prolotherapy, dry needling, myofascial release, biofeedback, and more.
It’s hard to think of all of the things we have done and tried to get out of pain, have some relief, and understanding.
I do feel lucky that my husband has stood by me and listened to my ails and woes, my inability to handle the severe stabbing pain that came with this condition when pain was not under control. “He could have just hit the road”, people would say.
Remembering our wedding vows, I do know there was a phrase “in sickness and in health”.. Doesn’t that apply?
Nevertheless, my husband has not doubted my illness, how much pain I was in, how much my body hurt, and how frustrated I would get that I didn’t have answers early on. He was there for me. Part of marriage is listening to your loved one, your partner, and doing what you can to be understanding and patient.
Not having a support system is very difficult. Having people doubt or not believe you is also difficult. Why in God’s name would you make anything up? I was not a malingerer, someone who desired attention, nor did I create something that was “all in my head.”
Yet, there are doctors out there that don’t have the capacity to listen and offer support and ideas on how to manage a condition that is changing the quality of your life. There are also family members that may or may not support or believe in you. What do you do then, when the closest people do understand or want to learn, anything about your chronic illness?
I have dealt with some of this, and yes, it does hurt. Just because it is “invisable” and you can’t see the dislocation or the trigger points in the muscle, does not mean it doesn’t exist. Think of all of those invisible illnesses.
I often tell people, “muscle conditions are some of the hardest to diagnose, as there is no such thing as a “muscle doctor.” as a specialist. We have doctors for nerves ( neurologists) doctors for bones ( orthopedists) , autoimmune conditions, arthritis ( rheumatologists) etc. Physical muscular problems that can’t be seen by MRI or Xray become hard to discern by these specialists. I had a doctor once yell out that I probably had RSD because of the pain I was in and not seeing it on the screen. !
Creating Your Own Support System
Nevertheless, back to the issue of support. If you find you don’t get support at home from other family members regarding the condition you have, invisible or not, create your own support system.
- The closest to you, your hubby, wife, boyfriend, girlfriend is one that you should be able to be yourself around. Tell them how you are feeling. What kind of day you are having. If you need assistance with a bath, taking meds etc, let that person know. My hubby often drives as I take medication and I feel more comfortable at the moment, with him driving.
- On-Line Support groups– At first, with EDS, I spent many an afternoon, when my pain was not controlled, on this site- There were others there having other invisable chronic illnesses, others with EDS, that could share information, and just lend an ear. I felt this was very helpful at the beginning when things were the most difficult. The key is to not go there every day and get caught up in negativity- posts should be helpful in finding things that work for others, more information, personal stories, not bringing people down.
- Social Media Groups- I belong to a facebook group over 40 with EDS. There are other groups with EDS with a younger population. It is therefore tailored a bit more to my needs and what I may be experiencing at this time in my life.
- Therapy– Nothing wrong with getting your feelings out, or feeling like you need to talk through an objective third person, who has training. Having my life change the way it did was very difficult for me to get used to at first.
- Friends- Try and surround yourself with positive and helpful people. If your friends are negative and don’t beleive you, it will make it difficult on a relationship.
So, if you are experiencing less support at home with family, hopefully, these suggestions can help. I needed support, I felt my husband is always there for me, but sometimes I just needed to “lessen the load” in other ways too. You can find support!
If you are looking for other blog posts on other health-related topics, have a read! and I will leave you with this saying on this mug I found on ETsy “It;s Not in My Head, Its in my Collegen!) EDS is a condition where faulty collagen causes hypermobility, dislocations, and muscle trigger points, which in turn causes pain. I just thought, cool mug! 🙂
Have a great weekend