13 In Personal

Chronic Illness – Why It’s so Important to Have Support

 

 

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. 

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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

Jess xx

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13 Comments

  • Reply
    Local Link, North Carolina May 6th to May 12th – GLOHBAL STYLE
    May 15, 2019 at 2:16 pm

    […] Chronic Illness – Why It’s so Important to Have Support from Elegantly Dressed and Stylish […]

  • Reply
    Mutton_style
    May 15, 2019 at 3:43 am

    I had no idea Jess. Thank you for sharing your story. Thanks for joining my linkup too. Great point about no such thing as a muscle specialist. Interesting that there isn’t such a disciplin.

  • Reply
    nschristine
    May 11, 2019 at 10:03 am

    Living with chronic illness sucks. I wish I could have a better support system than I do. However, over 3/4 of my life has been spent on trying to keep my own head above water. I’ve got chronic pain, chronic migraine, depression and anxiety. I think what I hate most is when people say “oh I’ve got XYZ too.” Um, no you don’t, you have a normal illness not the chronic kind. Getting those who think say normal anxiety is the same as your debilitating life altering condition to understand can sometime be like beating your head against a brick wall. There is one good point to chronic illness. Those who have it are very compassionate. We get what it is like to be alone, be sick or not believed. I also think chronic disease sufferers are very protective and stand up for others in the way that they never got.

    • Reply
      Jess Jannenga
      May 12, 2019 at 11:50 am

      Hi Christine. I am sorry to hear you don’t have enough support. I also suffer from anxiety, so I know it is hard to deal with at times. I know what you mean about the comment, and it may just be a way of someone trying to identify or relate to you to make you feel better. It is hard for people to understand chronic pain etc, unless they have and experience it. I really appreciate your comment and wish you the best that you get more support that you need. xx

  • Reply
    Amy Ann Arnold
    May 10, 2019 at 1:40 pm

    So glad your husband has been such an amazing support for you. I truly cannot imagine.

    Amy Ann
    Straight A Style

    • Reply
      Jess Jannenga
      May 10, 2019 at 1:44 pm

      Thank you Amy, it has been very helpful to have a supportive hubby and also have other resources that I counted on for support. It really is imparitive to find doctors too, who believe you. Thanks for stopping by! xx

  • Reply
    Lisa D.
    May 10, 2019 at 12:21 pm

    Support is indeed a must! I’m so glad you have a wonderful husband that will listen.
    I have the same problem with Meniere’s Disease. I have never been diagnosed but have every single symptom and even have the violent vertigo associated with it. Doctors will not listen. Unless I can find a doctor that has suffered it themselves, they will not listen. It is also invisible and I look perfectly fine but I am miserable most of the time. (3 years now)I know my husband is tired of hearing me complain but still listens. He does not understand though. He thinks it’s something we all suffer with. It’s way more extent than that. I will usually resort to online support.
    Have a wonderful Mothers Day weekend!
    Lisa

    • Reply
      Jess Jannenga
      May 10, 2019 at 12:31 pm

      Hi Lisa!
      Yes, if I didn’t have his support I would have gone bananas! He has been with me many times to the hospital and I would think “What a fun date!” I am sorry to hear you have Meniers, and Vertigo. My mom just has vertigo and I know that can be quite bad and tough to deal with. It really is tough sometimes to find a doctor that will listen and take the necessary course of action. WIshing you the best in finding someone. Yes, on-line support and having someone to relate to at times can be helpful.
      Happy Mothers day weekend to you! xx

  • Reply
    Marta
    May 10, 2019 at 7:54 am

    Support is very important with lots of things in life and when we don’t have it, it can be very hard. When it’s a mental illness or a physical illness that people can’t see, it’s hard for them to understand but it shouldn’t be because they don’t get it or don’t see it that they shouldn’t support the person in pain. You’re an amazing example and I definitely look up to you and your strength and I wish you and everyone else with EDS the best.

    • Reply
      Jess Jannenga
      May 10, 2019 at 12:33 pm

      So true, if it is a family member or someone close to you, it is so important to not doubt, but support that person. Thank you so much for your kind words, that means alot. xx

  • Reply
    thisblondesshoppingbag
    May 10, 2019 at 6:04 am

    You are so right – support is crucial. I bet it is hard to live with a condition that seems invisible – and I’ll be you get lots of unsolicited advice. You are such a great spokesperson for this illness. Thank you for sharing your struggles and being so open and honest – I’m sure that’s not easy but it helps your readers to be more empathic and aware,
    You have a great husband but he has a great wife!
    xo,
    Kellyann

    • Reply
      Jess Jannenga
      May 10, 2019 at 12:32 pm

      Hi Kellyann
      It is hard. At the beginning, I had to bring a cushion to every restaurant, ( when I could go to one) and felt so self conscious about it, people dont see the condition on the outside. I appreciate your comment. thank you friend! xx

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