MY EDS Challenge Day 9- Mental Health Week in Hypermobile Life

  • May 9, 2022, 1:48 p.m.
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  • Public

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 9- Mental Health Week

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Many Zebras struggle with their mental health. Common co-morbidities of EDS and HSD are depression and anxiety. Our symptoms will be different every single day and we will not be able to predict what we can and can’t do. This makes having a social life and a work life very difficult. We will have more issues with friendships and relationships. Relating to able bodied friends is tough when you spend a lot of time in bed, going to appointments, researching, and dealing with the financial hardships that come with being disabled. We cope with depression for a lot of reasons but one being sadness over missing out on a lot of social & financial things that normal people do, and seeing our friends go on without us. We will have to adopt a “go with the flow” attitude when many of us are used to being perfectionists. This means having to sign up for the bare minimum in case we are feeling too bad to get a lot done. Your work life will be affected and your sense of purpose and meaning which often times revolves around what we do for a living will need to be re adjusted. They often say that you have to grieve the loss of your former life, and the process is non linear. Working with a talk therapist is important for the grief process and having someone to help you re-design your new normal.

Anxiety is a tricky one because we get told that our symptoms ARE anxiety… period. This comes from a poor understanding of the nervous system and sometimes a doctor’s desire to pawn us off onto psych doctors. Our symptoms closely resemble anxiety but often times with nervous system dysfunction these symptoms come about without a psychological trigger. Heart rate, blood pressure, and breathing are controlled by the UNCONSCIOUS nervous system (autonomic). People with EDS and HSD almost always have some type of dysautonomia because of connective tissue issues. Fluctuations of these systems suddenly cause our nervous system to THINK there is an external threat which causes adrenaline dumping. This turns into an inappropriate feedback loop. This can greatly affect our sleep as well. Most of the time this leads to imposter syndrome because of medical ignorance and improper explanation of our symptoms causes us to think we are actually going crazy and its all in our heads.

On the other side of the coin, there are anxiety symptoms that are actually caused by psychological triggers. These are often secondary to the autonomic dysfunction. This can stem from fear of going out in public or new places and not knowing which symptoms will show themselves. Not knowing if you are going to complete your work or schoolwork due to symptoms is upsetting. Medical trauma and flashbacks of procedures can cause a lot of mental anguish. Fear or having to deal with new doctors and having to explain your situation all over again and fear of being rejected or pawned off as crazy. Anyone in this situation would develop actual depression and or anxiety due to these factors so it is quite understandable why depression and anxiety is so high in the zebra community.

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